Survived breast cancer in 2001. Now in 2015 my lymphedema is in my trunk, armpit, and arm. It is very painful. I can't afford physical therapy, so I try to deal with it the best I can daily. My heart goes out to anyone suffering with this condition.
What is extremely sad is that a well known actress is what it takes to bring awareness to lymphadema ....this is outrageous on all levels. Only the FAMOUS grasp attention in every common folks to be seen and heard 😢 We are all ONE and the same......wether we are famous or not!!! This is such an injustice to humanity in whole.
People love Kathy Bates for her work in hollywood. I could care less about that. I am thankful for her strength to bring attention to advocating for this disease. Thank you Kathy for using your platform for all of us lymphies knit together by our compression garments, our pumps, and our unique struggle. I live with lymphedema in my right leg and my torso after winning the battle again ovarian cancer
Thank you Kathy Bates for all your doing to help us that suffer from lymphedema, it was completely new to me ,my Dr. didn’t bother to tell me about it , after my surgery. It’s painful, very hard to live with it. 🙏🙏
Kathy - you are rocking this! Thank you for making the struggle of Lymphedema public. So many do not understand how this impacts daily life. I am a teacher and find that every day this is an issue to deal with. I applaud your desire to make this a national issue - so many suffer. If I can help, let me know.
Thank you so much. I am in Northern Ireland. I was amazed to learn how lymphedema is more common in the USA than Parkinsons, 10 million blew my mind too. I have mild lymphedema in my left arm after a lumpectomy for breast cancer in 2012. Yes, it's a pain. This has inspired me to keep going here.
I have Lymphedema in both legs. Health insurance covers very little of the necessary treatment for Lymphedema unless you have cancer. I find that rather unfortunate that I am living with a disease for which there is no cure; a vascular surgeon who is my Lymphedema Specialist has strongly recommended a Flexi Touch machine (type of pneumatic pump machine to help direct the lymph fluid during therapy), of course the only time I can see my Lymphedema physical therapist is if I have a set back & the Dr. refers me & the ins. Co. approves it. My health ins. does cover 80/20% two pair of specialized custom pair garment socks for me per year. I generally need 3-4 pair per year at a cost of $560 a pair. I also was recently recommended to start wearing night time custom thigh high garments in hopes of a little night time compression for relief in my thighs. Because the cost was custom garments were $2,2000 my health insurance denied those just recently as well. How am I supposed to get well when I can’t get what is needed because insurance is allowed to repeatedly deny & ignore Lymphedema??
I have it in both legs, I have had to go thru the wrap 4 time so far. And i'm going to have to do this the rest of my life. Thank you for speaking out. Linda
She is such a great actress but she is an even better spokesperson for lymphedema and all the people suffering with it. That was really brave of her. People in Hollywood tend to hide things like that and pretend there is nothing wrong or they are unaffected. But Kathy Bates actually came out and let people see that she is right here with the rest of us guys on good old planet Earth.
You probably dont give a damn but does anyone know of a tool to get back into an instagram account..? I stupidly forgot the account password. I would love any assistance you can offer me
Thank you so much for sharing this. I am in New Zealand, and my lymphedema also started after breast cancer surgery. I am so glad you are speaking out. What irks me most was the lack of information (in my case nil) given to us prior to an op about what lymphedema is, and what having the lymph nodes removed will do to my body. Anyway, love that you are exposing this 'silent epidemic' because this is happening all over the world I suspect. All the best. Meanwhile, I have put in a complaint to NZs Health & Disability Commissioner about the lack of information and we shall see what comes of that. Also, I'm a big fan of Kathy Bates.
A major consolation for any who weather the darker storms of life.... Our measure of suffering puts us on the fast track for soul growth. (There's more to what might appear in these meager words)
learning about the lymphatic system, how important it is, it won’t get better until they stop chopping out the lymph glands which is not the answer for cancer… we need our lymph to survive
Obrigada pela sua dedicação! E espero que um dia os seus frutos também possam ser colhidos pelos brasileiros. Minha mãe também passou pelo tratamento do cancêr de mama e tem um braço assim!
im in the uk - so i have been under the NHS since i was in my mums tum = thank God for the |NHS = btw i watched with horror a bloke from the USA vlogging in a UK NHS bed and laughing abt the care and the hospital - i was disgused, i suggested he tell the staff that he is on holiday so can pay for his care from his travel insurance. We might not have the glamour of USA hospitals but we have very hard working people, i am a retired REG NHS Nurse and never have i seen anyone behave that way - btw he had trapped wind which cam be very painful - he costed what he would of paid in the USA and it would of been abt $7,000. You all need a NHS in America - so there is care on hand for everyone.
My leg was a nightmare cuz they took all from that side. Ended up with lymphatic surgery. Doc did a pretty good job but still damaged for life. Lots and lots of overkill. O well. Thanks Kathy. It didn’t mess up your acting 🌹🌹🌹👏🏼👏🏼👏🏼🦾🦾🦾
lymphedema occurs on biopsy of lymph nodes ...and so many have it. i have been trying to find out its root cause. i am a naturopath.i woiuld like to cure the sufferers if possible. ADDED>> recently after research i found out that for some people it is curable at least by 50% by diet and lifestyle changes along with some herbs prescribed by expert herbalists of the east.
My husband has it and he was advised the stockings FOR YEARS. He is only 67 yo and only recently has it been identified as what it is.. lymphedema. He has been home bound for 8 weeks and it feels hopeless. I feel that his primary was negligent. It is wrong for someone to suffer like this and to not be offered therapies, etc. Honestly I want to sue.. has anyone had luck doing this? I just feel so pissed off that he was neglected.
My mother has it. She had her overlies removed in 2006 because of cancer and was given Radiotherapy at that time. For the past 8 months, her one leg has been swollen to a massive size. We're from India and aren't that well off. I'm in agony thinking about how I can get her help. And does this mean she has to live with it for the rest of her life?
I have lived with Lipedema for years but was just diagnosed last month. I knew as far back as my high school years that something wasn't right, I just didn't know what. When I was in my 20's I started falling. My legs started swelling, my hips and but got bigger with each pregnancy. Now I'm immobile. I pray I can be helped.
hi i have a lymphedema on my right leg, the cardio dictor said there us no remedy.please help me, there us no dictor of lymphedema patient here in cebu city, Philippines- my name is evelyn reyes
I was born with it as well started in my right leg surgeon operated on me at the age of 7 or 8 went down each side of my leg at different times of course and they eventually healed and it seemed to stop the swelling they years later it started in my left leg by this time I had different doctors and was told I shouldn't have been operated on the first time I've had the stocking the pump and with every new treatment I had a different doctor and never finished treatment with the same doctor I was left to fin for myself so now the left leg is way beyond swollen being on Medicare and from a small town it's just not alot of resources
Try having gastroparesis, not very many doctors even know anything about it. My husband has lymphedema and his calves cracked and gets infected. So everybody has a demon on there back. Pulmonary Hypertension has no cute. I stopped crying a long time ago. I decided that I am just going to life on earth am looking forward to meeting my maker.
Yes Kathy! Sing it sister you give a HUGE voice to Lymphedema thank God for you. Thank you for educating thank you for sharing your story because your story is the story of many, many people. Thank you for standing up for 10,000,000 who don't have the voice and reach you have and I will be there in congress with you standing with you.
I was diagnosed with breast cancer in January 2019 and had a complete mastectomy of my right breast in July 2019. After my cancer treatment was complete and April 2020, I was initially given some instruction by a lymphedema therapist on lymphatic drainage as well as exercises to improve my range of motion for my right arm. I had 15 lymph nodes removed during surgery, and I honestly did not think that this would be a big factor for me in getting lymphedema. However in December 2021, I noticed my right arm was swollen and called my therapist at the clinic. I have been working with her since. I’ve had my arm wrapped beginning with three times a week initially, and I’m now down to wearing a compression garment daily and a heavier one at night. I also have been measured for a sleeve that will pump my arm to help reduce swelling. I’ll have to use that an hour every day. This is the third therapist I’ve seen, and I do like her very much. But, I have to say that neither my surgeon in Boston, my oncologist here at home, nor the first therapist at the clinic told me once someone gets lymphedema, it is not curable, but manageable only. When my current therapist told me my lymphedema would not be curable, I was in shock and disbelief. My breast cancer was stage three, and my Boston oncologist said that was curable. To think that lymphedema was not going to be curable made me so upset and angry. I came home that day crying my eyes out. I kept thinking how can they cure my breast cancer, but they can’t cure the lymphedema. That’s just not right. I’m still trying to adjust to this knowledge. I’m still upset, but I hope that in time I will adjust to this very real and very debilitating condition. Thank you so much Kathy for speaking up for all of us who suffer with lymphedema. Your voice has helped me.
I had the same experience with my doctors, fabulous cancer treatments that help me become cancer free but no one spoke about lymphedema. I found out I had lymphedema less than two months ago (12 months after I finished my treatments) after heavy swelling of my left leg. No doctor mentioned the risk of lymphedema even if my lymphedema was totally expected because I received radiation treatment for bladder cancer that had spread towards the lymphs on my lower back. I didn’t flip or got mad like Kathy did simply because I’m still fighting fatigue and exhaustion and have not energy to spare, but the frustration of getting this disease after cancer is enormous.
My mother just recently passed away, and the doctors never mentioned lymphedema and I didn't know what she died from until I watched this video, thank you for the awareness!!!!
I am glad that you are talking about this. My sister has been struggling with the pain of lymphedema for many years. She developed sepsis a few days ago. She came home today and is taking it one day at a time. As you know there is a lot of therapy that goes with lymphedema to keep it under control and from what I understand anyone can get it. Insurance pays for some therapy but not the bandage supplies. This can cost a fortune. I wish you well and I hope that there will be a cure soon.
@@venudoddavarapu9186 Thank you and I’m sorry your sister has this too. I hope they find a cure for it and there will be more hours of education for doctors on how to help people who have lymphedema.
How wonderful to have such a spokesperson I am completely devastated, I have abdominal and pelvic lymphedema following a robotic hysterectomy this summer for endometrial cancer . My surgeon did not explain anyting about the risks involved nor did she mention my CT scan did not show issues with my lymph nodes they were clear. This condition is so painful there are not enough therapists around and it is terribly expensive. Had I been given a chance I would have told them not to take my lymph nodes, unfortunately I just nodded and agree to whatever my surgeon wanted to do out of complete ignorance and fear of the cancer.
Thank you for talking about this ❣️ My husband has been living with this for 22 years. He has been in and out of the hospital quite a bit. But he makes the best of it. But some days are so hard for him.
God bless you for talking about this issue. I am in the same boat; there is NO one around me far as medical staff that knows anything about this. My wound doctors knows more than any specialist I have been to. I have a sever case in both legs, and since I have had no cancer surgery.. , and I am not diabetic, so some of the treatment centers will not see me because of this ... Now, I am having to drive to another town to get treatment. NONE of these doctors I have seen for this will talk to me about it at all. They hand me a internet print out which I already have read, and give me water pills and send me on my way. This has been very disturbing to me, not having anyone help me with this matter.
I too was put on water pills (diuretics) in the early stages because I was misdiagnosed as having Edema…..wrong and diuretics is complete opposite of what should be done with a Lymphedema diagnosis.
I have lymphedema in my right leg. It was told to me I would have it the rest of my life. I elected to have surgery on my veins , and have yet to be given the details of the aftermath of surgery. Please pray for all of us who suffer with this and your dream is my dream. Thank you for speaking out.
She is ssooooo sooo right. The doctors shake you off. Also good doctors, because there is not enough knowledge spread out about this disease. And it IS problematic on a daily basis!!!!! Thank. You. Mrs. Kathy Bates for coming forward and helping to awakening awareness. 👏🏻👏🏻👏🏻👏🏻⭐️⭐️⭐️⭐️⭐️
My Sister in law had breast cancer and after having her surgery along with lymphodes removed she developed lymphadema so I treated her with lymphatic drainage massage which worked beautifully. People that are suffering with this can have lymphatic drainage massage which cuts the meds emnensley
Dear Kathy: When you go to congress...I'm going with you! I've developed lymphodemia in my left leg which the cancer had spread to and in the trunk area after 15 years of having Stage IV Colon Cancer that had metasized to 4 other places. My husband died of ALS when I was diagnoised with Cancer. In 2013 I was a caregiver to my brother, my only sibling while he was dying of spinal cancer. He had fallen on me and then the lymphodemia has occurred. It's living hell. It's so bad that I have become agorphic and suffer sever daily. It is debilitating. LET'S GO!
She's an amazing actress and person!!! She perfect to me...because she's real... Beautiful voice and diction... Adore you, Kathy... Wellness healing your way. In remission from lymphoma.
Thank you, Kathy. I have this in my legs, from the MS I also have. They say it comes from lack of movement, but mine came on when I was quite active. Now, not so much, because it is hard when you got two big legs to drag around. It is awful, and just one more thing that makes MS awful. Yes, we need help. Kathy, you are beautiful.
@@rubyparchment5523 Hang in there, Ruby. Mine has eased up a bit recently but still have some swelling. It is so bad, I cannot even get support stockings on. Now, I find I am falling a lot so have to rely on a walker so I stay upright. But omg do they ever have expensive drugs for MS. They know we will try anything for this dreadful illness, and in case you don't have MS, we are talking about upwards of $3000 for one month. The drugs do not make you feel better, but they "might" slow the progression of the disease.
Kathy thank you for the awareness of lymphedema it is great for others that have lymphedema to hear the voices of all they do have lymphedema and what they do go through a big thank you to you
It was wonderful listening to Kathy Bates talk about living with lymphedema. I have been diagnosed with mixed lymphedema. I am not being followed by a doctor as there are not any in my area. It is amazing to learn that there are so many people living in such a great country who either go undiagnosed or untreated.
Wow... She's very down to earth for a celebrity which is astounding to me....I have LE too n I had no idea that it was a bonafide disease til I got it. I like her n she makes you feel hopeful
I LOVE you Kathy Bates for speaking out for Adipose Disease ♡ I have Dercum's Disease and many of us (me not as yet) have Lipedema and Lymphedaema. I hope you have discovered Whole Body Vibration plates for lymphatic drainage? ♡ We are a Canadian FBk group called DERCUM'S DISEASE AND OTHER FAT DISORDERS IN CANADA 🇨🇦 created by the AMAZING DD warrior Kim Wilson 👏 ❤
My husband just told me that nobody knows therefore nobody cares. I'm starting not to give a shit about my Lymphedema either. As if the breast cancer wasn't a cash cow to begin with, Lymphedema is a total cash cow. I'm so sick of it. I'm sorry you're suffering too Kathy Bates. And now that there is a machine to use daily both on the trunk and arm in my case, BLUE CROSS BLUE SHIELD WILL NOT COVER THIS DEVICE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ARRRRRGGGGGGHHHHHH!!!!!!!!!!!!!!
Its a constant uphill battle. Here in the UK you can get some help with it if you push yourself to do the research and find out who deals with it but some have to travel miles to get to a qualified lymphedema practitioner. We are lucky with our NHS system re money to pay for things and indeed our prescriptions are now free for cancer or people suffering side effects from cancer treatment but the most annoying thing is is that it covers medicine if needed but NOT fabric supports ... it is unbelievable how little help we get too. Its demoralising and makes you feel like no one cares, I agree. If you have money, you're ok and can get private health care and massages etc. Until then, we have to continue to find out any useful practical information ourselves and not give in to it. I've had it since my cervical cancer in 1990 when I was 30. I'm now 56, it's chronic and I'm very swollen but I 'try' and do my best. Its sooo time consuming.. I cannot live without my stockings... and my leg wraps.. xx Good luck to you sweetheart. Whenever I feel unable to cope I always see someone so much worse than me and I am thankful mine is at least marginally under control. :( xx
I was diagnosed with lymphedema 2 years ago after getting an infection in my leg from a pool I was doing aqua therapy. I was diagnosed with uterine cancer in 2014. I had a total hysterectomy and 25 treatments of radiation. The medication I was on also destroyed my cartilage. I had both hips replaced and back surgery. In April during the worst part of this pandemic, my mother became ill. She was 94( I think she had a stroke) I chose to keep her home and take care of her. I am a nurse of 40 years until I became disabled. I didn’t lay down for a whole week. My legs got so swollen and started draining. My skin got so macerated with open sores. It is the end of October. My legs are still draining. I see a wound care doctor once a week. My son and husband have to triple wrap my legs. I am in so much agony. Can any one help?
I have "canckles" from my lymphedema 7 years after double mastectomy. I am FINALLY getting help from a physical therapist (physical therapists don't just treat this, you need to find PT that will specifically say they treat lymphedema). I had 4 lymph nodes extracted with 3 being malignant. (She talked about the military, PTSD is a very serious issue. Mental health IS HEALTH CARE!!!) Because I had reconstruction immediately after the mastectomy, I didn't have too much of an issue. But now they say it's rare but you can get cancer from the scar tissue from reconstruction!!! My implants are for life they told me later.
Less than three month ago I had to get a pacemaker and as if that wasn't enough deal with I just find out I developed lymphedema do to the pacemaker surgery...i just broke down.. I'm lost in it all. . so as I'm grateful to be alive and not taken life for granted... I'm dealing with my left arm swelling and my ankles.. My right leg..and the pain I'm waiting for a call for a lymphedema specialist appointment and physical therapy.. For treatment Prayers for everyone I never knew anything about this I'm 60... Now I have it and there's no cure... God Bless Everyone
Thank you for deciding to become a spokesperson. No one listens to the ordinary person. Although I am a UK citizen I acknowledge that we need as many people as you in the public lime light to push this important issue forward to raise awareness, money for research, help for sufferers and their families who worry about us too. THANK YOU SO VERY MUCH X
I developed Lymphedema in my arm from a simple surgery removing a small cyst on my shoulder. It is scary, depressing, and debilitating on even a semi mild level like mine. I'm happy to see a well known face that is dealing with this because it might give the push we as a community so desperately need. Thank you Cathy for being a cheerleader for us all! I hope we can see improvements soon!!!
Thank you Kathy Bates for being a advocate for all of us who suffer with lymphedema, I found out I had this problem About 5 years ago but I believe Ive
I've had it much longer, because my legs always hurt and felt so heavy making it hard to walk in I now wear compression socks and use compression boots every night to push the fluid out of my legs. I am very surprised so many people do not know what is and including many doctors
You are right on with all your descriptions. I am only 4 weeks post OP and had15 lymph nodes removed. Even at this point the worse things is the lymph swelling. I am a very active 71 year old. Damn this is another thing keeping me down. I do hope you succeed in your personal fight.
This video expressed so beautifully what those who live with lymphedema feel. Thank God to be alive and well and what a royal pain in the chest/arm/hand/neck. It takes two hours a day to pump and MLD and wearing a compression bra that looks and feels like armor 24/7 not to mention a sleeve/gauntlet. Thanks for being a spokesperson and count me in if you want to create a voice for more trained lymphedema PTs. Mine is amazing though it took over a year to find out I had lymphedema (20/14 years out) and I needed to control it for life. We need better awareness so those who treat cancer wonderfully can send us to those who prevent and manage the outcomes of cancer treatment. I want to support those who can't afford the cost of a pump and compression garments -- even after insurance.
How do we find what we need? Where do we find these compression sleeves. I’ve never heard of a compression bra but I have nerve pain across the top of my chest. I just found out a couple days ago that I probably have lymphedema but it wasn’t from my doctor. It was from my friend who’s the Doctor Who sent me a video that I realized was spot on. Before surgery the doctor asked me if he could take lymph nodes and I asked about the consequences of me says oh you have millions of them
Thank you for telling your story. At 36 in 2018 I got a bilateral mastectomy, lost 16 Lymph Nodes. My radiologist discovered my Lymphedema. I’m Stage .2 & suffer every day. It is hard but we have inspirational women like yourself educating us!! ♥️♥️
God Bless Kathy for leading with her heart to reach others who will never meet...she truly is an Angel in Training who is battling health challenges like so many of us are!!!
Lymphadema is curable only if the person is wiling to go outside the BOX OF CONVENTIONAL MEDICINE. There are so many natural remedies out there but the most important is to seek out a spiritual healer that will help you heal all your INNER CHILD WOUNDS 🙏 ✨
I have had my fingers swell for years I told my dr.a year ago My right leg was noticeably bigger than my right leg. Finally I was told I have this I can’t spell it yet or spell it yet . I was told once I get a specialist to explain hard I have worked to get the swelling down. I was told to wrap my leg no instructions or what to use, keep my leg elevated above my heart. I seen on a TH-cam to lay on my back with my legs going up the wall at least 20 minutes. Another TH-cam said it’s important about what I eat, I got this as another symptom of my long haul Covid-19 I got Covid 19 October 27, 2020. I didn’t realize this at first I don’t have cancer never have had cancer. I think the ones who died were lucky if they were going to heaven. This Covid is one that Justus keeps giving ! I hope I can find some support threw this group.
I just found out I have Lymphedema in my legs, both primary and secondard. I believe I got it after my total knee replacements. My right leg isn't affected as much as my left, my left knee got infected after the replacement, had two additional surgeries since then. Was only told to wear compression socks, knee high, 20-30 mmHg. I looked it up, and know to keep my legs moisturized now, and am at a loss of what else I can do.
Same hear. This is exactly what happened to me after having five total replacements. But the lymphedema got worse after having covid-19 pneumonia now I can barely walk my legs are heavy like lead. Hope all is well with you today thanks for sharing
@@carlawilliams8136 So sorry to hear this. I wear compression socks every day, the one time I don't I notice my ankles starting to swell, and know I am starting to hold water. I have also started a Ketogenic way of eating, 17 months ago now, and have dropped more than 81 pounds, which has helped tremendously. Dr. Ken Berry has many you tube videos, I know he has at least one on Lymphedema.
I have Lymphedema in both legs after receiving life changing injuries in a motobike accident. I can't afford to pay for private drainage treatment so am at a loss to know what to do. My legs are huge, especially the calf areas. I have had to buy size 24 trousers and take them in 6inches at the waist cos I need the leg size. I have to buy size 8 shoes even though I'm a size 4 as my feet are so swollen. I hate this, I am afraid of the future. I feel like a freak.
Beautiful. As a musician with lymphedema, I'm in the public eye and never hide my compression garment. I've been on television (even at the White House) wearing one. People ask what it is, and I am always open to educating. Folks don't realize how much time and money is spent on this incurable disease, as well as the mental issues that go along with it. My arm has not seen the light of day in years. I have to do manual lymph drainage daily, use a pump when needed, exercise and keep an anti inflammatory diet to be able to continue my career - and had adaptive equipment built for my instrument on stage, as well as keep a spare horn in my studio that is resting artfully in a cup that is attached to a cane, so that my left arm has less burden while I practice daily. I travel often and, carrying heavy equipment and flying on top of everything else is a serious burden to my arm. I try to encourage others to not hide their garments. We need to be seen. If more of us were out there with our compression/wraps, more people would realize that we are not just a few people with this disease. There are so many of us. It's too easy for us to be ignored, currently. Thank you, Kathy - you are a personal hero of mine. I've always loved your acting, but now, I know that I have always loved you as a human, too.
When you go to Congress in Washington I want to be with that group. I am now learning about this disease and it is mild yet some doctors want to give me pumps which is like putting the cart before the horse. Thank you for what you do.
That's true,insurance will pay for the visits to the occupational therapy place and all the wrapping,but will not pay for any kind of compression garments. I have lymphedema in both my legs and ankles. They want me to wear compression wraps everyday and at night at a cost of $400 a pair. It sucks but what are you going to do.
This WAS like someone get it...i have. Myxfoibrosarcoma cancer the doctor advise me of all the things that could happen after my surgery but never said a word about lymphedema wow I was recovering from my surgery I had an open wound things were going well. It was set and I start developing this swelling and it got worse and that's what I've been dealing with I haven't been able to even close to him yet the swelling is so bad I have been you know looking at things trying to learn what I can do listening to TH-cam so this is very educational and I'm like you Cassie I got really mad I thought I was doing good and then this came and I'm like why didn't they tell me this could even happen so I can prepare myself they don't tell you and now I have this and I know I've got to live with this chronic illness now but at the same time I've got to heal from the cancer as well so I'm mad too
The info in hearing in this video is heart wrenching and I am also mad as hell. My daughter suffers from both lymphedema and lipedema. She suffers seriously and has ran out of who to go to. She even had a Drs office call her the day before she was to have her appt and they told her don't come, were cancelling your appt because we don't know what more we could do for you than what's already been done. She felt defeated and basically like they told her just stay home and die. She recently had weight loss surgery. About a month later her swelling was seriously worsened, her calf was the size is a person's head. she got blisters on back of her right calf that began leaking and got a serious infection. Long story she was hospitalized and her with double antibiotics because she went into cellulitis. To many people have shut the door in her face. And the people who stare, make rude comments and the children pointing fingers, is destroying her heart. She was told also she can never have children. Reasons may not be related but I totally agree, we need to have more awareness and find a cure for this. She wants to be a player child to help the with the research with this. If you can help us we'd be eternally grateful. I'm here mom, Vicki Berry, daughters name is Kristi Rist. If there's any thing you can do, please reach out to me and I'll get back with you asap. Thank you in advance.
she is one of my absolute favorite actresses!.... I just love her and I hope she will find a way to heal 100%....infect I wish she would find Anthony Williams the Medical Medium, he has helped so many people to heal completely....
GOD BLESS KATHY...I HAVE IT AFTER DOUBLE MASTECTOMY - THE SURGERY...AND THE NEGLECTED LYMPHEDEMA AFTERWARDS MAKES ONE FEEL 'THE PARTY'S OVER BIGTIME. ITS EASIER FOR ME TO TYPE IN CAPS AS RIGHT, WRITING HAND AND ARM INOPERABLE WHILST SO SWOLLEN!
I was diagnosed with lymphedema around the holidays this year and I know pretty much what it is and the surgeon that preformed a botched vascular procedure on my left leg. I am upset and beyond torn apart inside both near the lymph nodes biologically and emotionally.
Wow Kathy I always love your work. I love what you said in this video. It moved me beyond words. I was diagnosed with lymphedema back in July in my legs. Presently I wear a uniboot on both legs . And I do physical therapy for my back and knee. My physical therapist gives me exercises to strengthen my legs. I was hospitalized for 5 days. Before I was diagnosed my legs were in horrible condition. Sometimes I have pain in my legs. God Bless you Kathy.
I had Breast cancer in 1994 with a lumpectomy on my right breast....Ten years later I was kite flying with my kids and the kite grabbed wind that pulled my right arm very hard... I felt the fluid literally flow down my arm and I was in shock....I have gone through the massage and I wear a sleeve every day....I'm mad as a wet hen that I had to throw away dresses that I can no longer wear....If only the Doctors had warned me, I would never have gone kite flying...I feel sad that information has not been shared with patients....Thank you Kathy for bringing this to the "forefront".....
I have this and thankfully my lifestyle has accidentally mostly kept in check until recently which lead me to discover I have it. Menopause and retirement caused me to have worse symptoms. Retirement..I have no need to stand for ten hours a day but I still am active but apparently I have to be incredibly active, like an athlete all,day long..which is unsustainable and I have no interest in riding a bike or standing all day doing what? I paint nde make art and I was so ex to finally have time..so here I am learning how to water color and needle felt and I’m swelling up with pitted edema and I’m thinking wow menopause is brutal until I really swelled up , fifteen lbs in three weeks in top of the twenty I slowly put on… wth! But sadly I don’t have healthcare so I am stuck trying to figure this out for myself so a hospital doesn’t end up owning my only possessions.
I have to say I am glad I found this video. I have seen some really bad situations with Lymphedema so I understand her worries at the time. I have Secondary Stage 3 Elephantids in both legs toe to hips. I went 18 years undiagnosed and even during that time especially the first 5 years when I was in constant pain, I have been lucky to not have weeping or cuts. I have had scrapes which luckily stopped in a few hours but Nothing like what I've seen can happen. Since I was diagnosed I have put all my time into learning everything I can about this Illness and trying to get Nursing, EMT, and Doctors in training to have more knowledge of not only what it is, what it looks like, and how to treat it. Most people get 60 minutes of training on Lymphedema unless they know someone who has it. Leaving the Field very thin with specialist. Nice to see Learn has such a great spokes person and keep up the great work.
My mother has lymphedema. It's 3 years since her leg has been swollen. I have read the symptom about it and they say that a long time with lymphedema without treatment will cause lymphangiosarcoma. So is that true? What percentage of causing this disease? I live in vietnam where lymphedema is not popular and there is no treatment about it. I am very nervous about her disease. How must i do know? Please lead me some solutions with it, thank you!
Madam iam from india and my mother is suffering from sever lymphedema her both legs got swelling and she is not able to walk so plz help my mom and suggest her plz mam my mother is my life and she is crying by seeing her legs plz reply to me mam thank you
I’ve been dealing with lymphedema in my left leg since I was a kid (it runs in my family). Finding a PT has been a pain. Currently waiting on a call back from a local PT program. Wish me luck! 🙏🏻
![[TH] FS vs BME - VCT Ascension Pacific - Lower Bracket Final](http://i.ytimg.com/vi/wnygqsR2Fig/mqdefault.jpg)
![It's NOT Obesity, it's Lipedema [with Siobhan Huggins]](/img/n.gif)
Survived breast cancer in 2001. Now in 2015 my lymphedema is in my trunk, armpit, and arm. It is very painful. I can't afford physical therapy, so I try to deal with it the best I can daily. My heart goes out to anyone suffering with this condition.
Persimmons Chickens Bob & Brad on the net , show some excercises for it and breathing technique (they are physical therapists).
What is extremely sad is that a well known actress is what it takes to bring awareness to lymphadema ....this is outrageous on all levels. Only the FAMOUS grasp attention in every common folks to be seen and heard 😢 We are all ONE and the same......wether we are famous or not!!! This is such an injustice to humanity in whole.
People love Kathy Bates for her work in hollywood. I could care less about that. I am thankful for her strength to bring attention to advocating for this disease. Thank you Kathy for using your platform for all of us lymphies knit together by our compression garments, our pumps, and our unique struggle. I live with lymphedema in my right leg and my torso after winning the battle again ovarian cancer
Kathy Bates you are the right person 4 this job I could watch this video a million times ! 💖💖💖
Thank you Kathy Bates for all your doing to help us that suffer from lymphedema, it was completely new to me ,my Dr. didn’t bother to tell me about it , after my surgery. It’s painful, very hard to live with it. 🙏🙏
Dr. never said a thing
i don’t get answers. physical therapist quit on me due to no progress.
Kathy - you are rocking this! Thank you for making the struggle of Lymphedema public. So many do not understand how this impacts daily life. I am a teacher and find that every day this is an issue to deal with. I applaud your desire to make this a national issue - so many suffer. If I can help, let me know.
Thank you so much. I am in Northern Ireland. I was amazed to learn how lymphedema is more common in the USA than Parkinsons, 10 million blew my mind too. I have mild lymphedema in my left arm after a lumpectomy for breast cancer in 2012. Yes, it's a pain. This has inspired me to keep going here.
I have Lymphedema in both legs. Health insurance covers very little of the necessary treatment for Lymphedema unless you have cancer. I find that rather unfortunate that I am living with a disease for which there is no cure; a vascular surgeon who is my Lymphedema Specialist has strongly recommended a Flexi Touch machine (type of pneumatic pump machine to help direct the lymph fluid during therapy), of course the only time I can see my Lymphedema physical therapist is if I have a set back & the Dr. refers me & the ins. Co. approves it. My health ins. does cover 80/20% two pair of specialized custom pair garment socks for me per year. I generally need 3-4 pair per year at a cost of $560 a pair. I also was recently recommended to start wearing night time custom thigh high garments in hopes of a little night time compression for relief in my thighs. Because the cost was custom garments were $2,2000 my health insurance denied those just recently as well. How am I supposed to get well when I can’t get what is needed because insurance is allowed to repeatedly deny & ignore Lymphedema??
I have it in both legs, I have had to go thru the wrap 4 time so far. And i'm going to have to do this the rest of my life. Thank you for speaking out. Linda
She is such a great actress but she is an even better spokesperson for lymphedema and all the people suffering with it. That was really brave of her. People in Hollywood tend to hide things like that and pretend there is nothing wrong or they are unaffected. But Kathy Bates actually came out and let people see that she is right here with the rest of us guys on good old planet Earth.
You probably dont give a damn but does anyone know of a tool to get back into an instagram account..?
I stupidly forgot the account password. I would love any assistance you can offer me
@Bryant Jayce Instablaster ;)
I was born with Lymphedema, and would love to be part of the group to go before congress.
Thank you so much for sharing this. I am in New Zealand, and my lymphedema also started after breast cancer surgery. I am so glad you are speaking out. What irks me most was the lack of information (in my case nil) given to us prior to an op about what lymphedema is, and what having the lymph nodes removed will do to my body. Anyway, love that you are exposing this 'silent epidemic' because this is happening all over the world I suspect. All the best. Meanwhile, I have put in a complaint to NZs Health & Disability Commissioner about the lack of information and we shall see what comes of that. Also, I'm a big fan of Kathy Bates.
A major consolation for any who weather the darker storms of life.... Our measure of suffering puts us on the fast track for soul growth. (There's more to what might appear in these meager words)
learning about the lymphatic system, how important it is, it won’t get better until they stop chopping out the lymph glands which is not the answer for cancer…
we need our lymph to survive
Mine is in my lower body from the waist down caused by heart failure CHF ...
Excellent video
Thank you honey i have it bad i get so disgusted its not fair dont understand y we all cant get the shot im in tears always we dont matter
I would go, I have dealt with this for twenty years.
I have given up bcuz of cancer n lymphedema. I have constant pain
It's so hard too fathom feel like a cripple at 52, do good to stand up and walk.
Obrigada pela sua dedicação! E espero que um dia os seus frutos também possam ser colhidos pelos brasileiros. Minha mãe também passou pelo tratamento do cancêr de mama e tem um braço assim!
im in the uk - so i have been under the NHS since i was in my mums tum = thank God for the |NHS = btw i watched with horror a bloke from the USA vlogging in a UK NHS bed and laughing abt the care and the hospital - i was disgused, i suggested he tell the staff that he is on holiday so can pay for his care from his travel insurance. We might not have the glamour of USA hospitals but we have very hard working people, i am a retired REG NHS Nurse and never have i seen anyone behave that way - btw he had trapped wind which cam be very painful - he costed what he would of paid in the USA and it would of been abt $7,000. You all need a NHS in America - so there is care on hand for everyone.
My leg was a nightmare cuz they took all from that side. Ended up with lymphatic surgery. Doc did a pretty good job but still damaged for life. Lots and lots of overkill. O well. Thanks Kathy. It didn’t mess up your acting 🌹🌹🌹👏🏼👏🏼👏🏼🦾🦾🦾
I have Lymphedema in both of my legs . l use a compression pump 2 times a day. Its hurts n aches somedays so bad.
Thank U kathy fOr being a advOcate i alsO have lymphedema N I AM n pain as we speak tell me hOW I CAN CAN HELP?
lymphedema occurs on biopsy of lymph nodes ...and so many have it. i have been trying to find out its root cause.
i am a naturopath.i woiuld like to cure the sufferers if possible. ADDED>> recently after research i found out that for some people it is curable at least by 50% by diet and lifestyle changes along with some herbs prescribed by expert herbalists of the east.
Plz do your best 😭
My husband has it and he was advised the stockings FOR YEARS. He is only 67 yo and only recently has it been identified as what it is.. lymphedema. He has been home bound for 8 weeks and it feels hopeless. I feel that his primary was negligent. It is wrong for someone to suffer like this and to not be offered therapies, etc. Honestly I want to sue.. has anyone had luck doing this? I just feel so pissed off that he was neglected.
My mother has it. She had her overlies removed in 2006 because of cancer and was given Radiotherapy at that time. For the past 8 months, her one leg has been swollen to a massive size. We're from India and aren't that well off. I'm in agony thinking about how I can get her help. And does this mean she has to live with it for the rest of her life?
I need help. What type of doctor should I see????
I hate lymphedema, it has made my life a living hell
I have it too Sonia, I know exactly what you mean but please try and stay positive mate, big hugs and support right at ya luv.
Mine too
I have lived with Lipedema for years but was just diagnosed last month. I knew as far back as my high school years that something wasn't right, I just didn't know what. When I was in my 20's I started falling. My legs started swelling, my hips and but got bigger with each pregnancy. Now I'm immobile. I pray I can be helped.
Mine too
Many (most) insurances won't cover physical therapy or stockings/arm sleeves. WHY?
Even doctor's won't my doctor keep telling me cost to much
I have Lipo-Lymphedema in my entire body and my Insurance said they will not cover compressions because they have NO METAL in them!! Total Bullshit!!
hi i have a lymphedema on my right leg, the cardio dictor said there us no remedy.please help me, there us no dictor of lymphedema patient here in cebu city, Philippines- my name is evelyn reyes
I was born with it as well started in my right leg surgeon operated on me at the age of 7 or 8 went down each side of my leg at different times of course and they eventually healed and it seemed to stop the swelling they years later it started in my left leg by this time I had different doctors and was told I shouldn't have been operated on the first time I've had the stocking the pump and with every new treatment I had a different doctor and never finished treatment with the same doctor I was left to fin for myself so now the left leg is way beyond swollen being on Medicare and from a small town it's just not alot of resources
Stop eat any type of bread. Gluten is very harmful. Check for couple of weeks
Try having gastroparesis, not very many doctors even know anything about it. My husband has lymphedema and his calves cracked and gets infected. So everybody has a demon on there back. Pulmonary Hypertension has no cute. I stopped crying a long time ago. I decided that I am just going to life on earth am looking forward to meeting my maker.
Kathy please reach out to me would love to talk to you
There is lymphatic repair now, no one should have to suffer from this.
Plz tell me more abt it
WHERE?????
Add my name to your cause
Yes Kathy! Sing it sister you give a HUGE voice to Lymphedema thank God for you. Thank you for educating thank you for sharing your story because your story is the story of many, many people. Thank you for standing up for 10,000,000 who don't have the voice and reach you have and I will be there in congress with you standing with you.
I was diagnosed with breast cancer in January 2019 and had a complete mastectomy of my right breast in July 2019. After my cancer treatment was complete and April 2020, I was initially given some instruction by a lymphedema therapist on lymphatic drainage as well as exercises to improve my range of motion for my right arm. I had 15 lymph nodes removed during surgery, and I honestly did not think that this would be a big factor for me in getting lymphedema. However in December 2021, I noticed my right arm was swollen and called my therapist at the clinic. I have been working with her since. I’ve had my arm wrapped beginning with three times a week initially, and I’m now down to wearing a compression garment daily and a heavier one at night. I also have been measured for a sleeve that will pump my arm to help reduce swelling. I’ll have to use that an hour every day. This is the third therapist I’ve seen, and I do like her very much. But, I have to say that neither my surgeon in Boston, my oncologist here at home, nor the first therapist at the clinic told me once someone gets lymphedema, it is not curable, but manageable only. When my current therapist told me my lymphedema would not be curable, I was in shock and disbelief. My breast cancer was stage three, and my Boston oncologist said that was curable. To think that lymphedema was not going to be curable made me so upset and angry. I came home that day crying my eyes out. I kept thinking how can they cure my breast cancer, but they can’t cure the lymphedema. That’s just not right. I’m still trying to adjust to this knowledge. I’m still upset, but I hope that in time I will adjust to this very real and very debilitating condition. Thank you so much Kathy for speaking up for all of us who suffer with lymphedema. Your voice has helped me.
I had the same experience with my doctors, fabulous cancer treatments that help me become cancer free but no one spoke about lymphedema. I found out I had lymphedema less than two months ago (12 months after I finished my treatments) after heavy swelling of my left leg. No doctor mentioned the risk of lymphedema even if my lymphedema was totally expected because I received radiation treatment for bladder cancer that had spread towards the lymphs on my lower back. I didn’t flip or got mad like Kathy did simply because I’m still fighting fatigue and exhaustion and have not energy to spare, but the frustration of getting this disease after cancer is enormous.
My mother just recently passed away, and the doctors never mentioned lymphedema and I didn't know what she died from until I watched this video, thank you for the awareness!!!!
I am glad that you are talking about this. My sister has been struggling with the pain of lymphedema for many years. She developed sepsis a few days ago. She came home today and is taking it one day at a time. As you know there is a lot of therapy that goes with lymphedema to keep it under control and from what I understand anyone can get it. Insurance pays for some therapy but not the bandage supplies. This can cost a fortune. I wish you well and I hope that there will be a cure soon.
My sister has been diagnosed with Lymphedema as well. I feel you. Sorry to hear about sister
@@venudoddavarapu9186 Thank you and I’m sorry your sister has this too. I hope they find a cure for it and there will be more hours of education for doctors on how to help people who have lymphedema.
How wonderful to have such a spokesperson I am completely devastated, I have abdominal and pelvic lymphedema following a robotic hysterectomy this summer for endometrial cancer . My surgeon did not explain anyting about the risks involved nor did she mention my CT scan did not show issues with my lymph nodes they were clear. This condition is so painful there are not enough therapists around and it is terribly expensive. Had I been given a chance I would have told them not to take my lymph nodes, unfortunately I just nodded and agree to whatever my surgeon wanted to do out of complete ignorance and fear of the cancer.
Same happened to me, all my lymph nodes removed under my left arm and no cancer in any of them..
Thank you for sharing your story. It is comforting to know we aren't suffering alone. I thought I was the only one who felt so angry about this.
I love her. You inspire me to feel better about the hopefulness relating to my lymphedema.
Thank you for talking about this ❣️ My husband has been living with this for 22 years. He has been in and out of the hospital quite a bit. But he makes the best of it. But some days are so hard for him.
Thank you Kathy Bates, I have it in both my legs however it is starting to spread....
God bless you for talking about this issue. I am in the same boat; there is NO one around me far as medical staff that knows anything about this. My wound doctors knows more than any specialist I have been to. I have a sever case in both legs, and since I have had no cancer surgery.. , and I am not diabetic, so some of the treatment centers will not see me because of this ... Now, I am having to drive to another town to get treatment. NONE of these doctors I have seen for this will talk to me about it at all. They hand me a internet print out which I already have read, and give me water pills and send me on my way. This has been very disturbing to me, not having anyone help me with this matter.
I too was put on water pills (diuretics) in the early stages because I was misdiagnosed as having Edema…..wrong and diuretics is complete opposite of what should be done with a Lymphedema diagnosis.
I have primary lymphedema. Diuretics only gave me chapped lips.
I have lymphedema in my right leg. It was told to me I would have it the rest of my life. I elected to have surgery on my veins ,
and have yet to be given the details of the aftermath of surgery. Please pray for all of us who suffer with this and your dream is my dream. Thank you for speaking out.
what was the update on your surgery? :)
She is ssooooo sooo right. The doctors shake you off. Also good doctors, because there is not enough knowledge spread out about this disease. And it IS problematic on a daily basis!!!!! Thank. You. Mrs. Kathy Bates for coming forward and helping to awakening awareness. 👏🏻👏🏻👏🏻👏🏻⭐️⭐️⭐️⭐️⭐️
My Sister in law had breast cancer and after having her surgery along with lymphodes removed she developed lymphadema so I treated her with lymphatic drainage massage which worked beautifully. People that are suffering with this can have lymphatic drainage massage which cuts the meds emnensley
Dear Kathy: When you go to congress...I'm going with you! I've developed lymphodemia in my left leg which the cancer had spread to and in the trunk area after 15 years of having Stage IV Colon Cancer that had metasized to 4 other places. My husband died of ALS when I was diagnoised with Cancer. In 2013 I was a caregiver to my brother, my only sibling while he was dying of spinal cancer. He had fallen on me and then the lymphodemia has occurred. It's living hell. It's so bad that I have become agorphic and suffer sever daily. It is debilitating. LET'S GO!
+2verbies I totally get and understand this, I'm sorry we all are suffering so...
Good luck 2verbies.. you need some positivity in your life, it's been tough for you xx
Extremely sorry about to hear all your situations. Sending my prayers and love
She's an amazing actress and person!!!
She perfect to me...because she's real...
Beautiful voice and diction...
Adore you, Kathy...
Wellness healing your way.
In remission from lymphoma.
I have swelling in my arms legs and my stomach could you please help me Cathy please
Thank you, Kathy. I have this in my legs, from the MS I also have. They say it comes from lack of movement, but mine came on when I was quite active. Now, not so much, because it is hard when you got two big legs to drag around. It is awful, and just one more thing that makes MS awful. Yes, we need help. Kathy, you are beautiful.
@cooksmary I have in legs and breasts. Just diagnosed at 67. Can’t walk due to arthritic knees. What a nightmare!
@@rubyparchment5523 Hang in there, Ruby. Mine has eased up a bit recently but still have some swelling. It is so bad, I cannot even get support stockings on. Now, I find I am falling a lot so have to rely on a walker so I stay upright. But omg do they ever have expensive drugs for MS. They know we will try anything for this dreadful illness, and in case you don't have MS, we are talking about upwards of $3000 for one month. The drugs do not make you feel better, but they "might" slow the progression of the disease.
Kathy thank you for the awareness of lymphedema it is great for others that have lymphedema to hear the voices of all they do have lymphedema and what they do go through a big thank you to you
It was wonderful listening to Kathy Bates talk about living with lymphedema. I have been diagnosed with mixed lymphedema. I am not being followed by a doctor as there are not any in my area. It is amazing to learn that there are so many people living in such a great country who either go undiagnosed or untreated.
Sorry to hear that. How are you going about it?
God bless you Kathy Bates! You are my hero!
Wow... She's very down to earth for a celebrity which is astounding to me....I have LE too n I had no idea that it was a bonafide disease til I got it. I like her n she makes you feel hopeful
Thanks Kathy
I LOVE you Kathy Bates for speaking out for Adipose Disease ♡ I have Dercum's Disease and many of us (me not as yet) have Lipedema and Lymphedaema. I hope you have discovered Whole Body Vibration plates for lymphatic drainage?
♡ We are a Canadian FBk group called DERCUM'S DISEASE AND OTHER FAT DISORDERS IN CANADA 🇨🇦 created by the AMAZING DD warrior Kim Wilson 👏 ❤
My husband just told me that nobody knows therefore nobody cares. I'm starting not to give a shit about my Lymphedema either. As if the breast cancer wasn't a cash cow to begin with, Lymphedema is a total cash cow. I'm so sick of it. I'm sorry you're suffering too Kathy Bates. And now that there is a machine to use daily both on the trunk and arm in my case, BLUE CROSS BLUE SHIELD WILL NOT COVER THIS DEVICE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ARRRRRGGGGGGHHHHHH!!!!!!!!!!!!!!
Its a constant uphill battle. Here in the UK you can get some help with it if you push yourself to do the research and find out who deals with it but some have to travel miles to get to a qualified lymphedema practitioner. We are lucky with our NHS system re money to pay for things and indeed our prescriptions are now free for cancer or people suffering side effects from cancer treatment but the most annoying thing is is that it covers medicine if needed but NOT fabric supports ... it is unbelievable how little help we get too. Its demoralising and makes you feel like no one cares, I agree. If you have money, you're ok and can get private health care and massages etc. Until then, we have to continue to find out any useful practical information ourselves and not give in to it. I've had it since my cervical cancer in 1990 when I was 30. I'm now 56, it's chronic and I'm very swollen but I 'try' and do my best. Its sooo time consuming.. I cannot live without my stockings... and my leg wraps.. xx Good luck to you sweetheart. Whenever I feel unable to cope I always see someone so much worse than me and I am thankful mine is at least marginally under control. :( xx
I was diagnosed with lymphedema 2 years ago after getting an infection in my leg from a pool I was doing aqua therapy. I was diagnosed with uterine cancer in 2014. I had a total hysterectomy and 25 treatments of radiation. The medication I was on also destroyed my cartilage. I had both hips replaced and back surgery. In April during the worst part of this pandemic, my mother became ill. She was 94( I think she had a stroke) I chose to keep her home and take care of her. I am a nurse of 40 years until I became disabled. I didn’t lay down for a whole week. My legs got so swollen and started draining. My skin got so macerated with open sores. It is the end of October. My legs are still draining. I see a wound care doctor once a week. My son and husband have to triple wrap my legs. I am in so much agony. Can any one help?
I’m so sorry. Hope you are doing better Bernice.
I am so sorry to hear. How are you going about now?
I have "canckles" from my lymphedema
7 years after double mastectomy. I am FINALLY getting help from a physical therapist (physical therapists don't just treat this, you need to find PT that will specifically say they treat lymphedema). I had 4 lymph nodes extracted with 3 being malignant. (She talked about the military, PTSD is a very serious issue. Mental health IS HEALTH CARE!!!) Because I had reconstruction immediately after the mastectomy, I didn't have too much of an issue. But now they say it's rare but you can get cancer from the scar tissue from reconstruction!!! My implants are for life they told me later.
Less than three month ago I had to get a pacemaker and as if that wasn't enough deal with I just find out I developed lymphedema do to the pacemaker surgery...i just broke down.. I'm lost in it all. . so as I'm grateful to be alive and not taken life for granted...
I'm dealing with my left arm swelling and my ankles.. My right leg..and the pain
I'm waiting for a call for a lymphedema specialist appointment and physical therapy.. For treatment
Prayers for everyone I never knew anything about this I'm 60... Now I have it and there's no cure... God Bless Everyone
Thank you for deciding to become a spokesperson. No one listens to the ordinary person. Although I am a UK citizen I acknowledge that we need as many people as you in the public lime light to push this important issue forward to raise awareness, money for research, help for sufferers and their families who worry about us too. THANK YOU SO VERY MUCH X
I developed Lymphedema in my arm from a simple surgery removing a small cyst on my shoulder. It is scary, depressing, and debilitating on even a semi mild level like mine. I'm happy to see a well known face that is dealing with this because it might give the push we as a community so desperately need. Thank you Cathy for being a cheerleader for us all! I hope we can see improvements soon!!!
Thank you Kathy Bates for being a advocate for all of us who suffer with lymphedema, I found out I had this problem About 5 years ago but I believe Ive
I've had it much longer, because my legs always hurt and felt so heavy making it hard to walk in I now wear compression socks and use compression boots every night to push the fluid out of my legs. I am very surprised so many people do not know what is and including many doctors
You are right on with all your descriptions. I am only 4 weeks post OP and had15 lymph nodes removed. Even at this point the worse things is the lymph swelling. I am a very active 71 year old. Damn this is another thing keeping me down. I do hope you succeed in your personal fight.
Very few doctors know anything about truly treating it.
This video expressed so beautifully what those who live with lymphedema feel. Thank God to be alive and well and what a royal pain in the chest/arm/hand/neck. It takes two hours a day to pump and MLD and wearing a compression bra that looks and feels like armor 24/7 not to mention a sleeve/gauntlet. Thanks for being a spokesperson and count me in if you want to create a voice for more trained lymphedema PTs. Mine is amazing though it took over a year to find out I had lymphedema (20/14 years out) and I needed to control it for life. We need better awareness so those who treat cancer wonderfully can send us to those who prevent and manage the outcomes of cancer treatment. I want to support those who can't afford the cost of a pump and compression garments -- even after insurance.
How do we find what we need? Where do we find these compression sleeves. I’ve never heard of a compression bra but I have nerve pain across the top of my chest. I just found out a couple days ago that I probably have lymphedema but it wasn’t from my doctor. It was from my friend who’s the Doctor Who sent me a video that I realized was spot on. Before surgery the doctor asked me if he could take lymph nodes and I asked about the consequences of me says oh you have millions of them
I HAVE LYmphedema, it. Has. Me in ED. OFTEN. AND. SOMETIMES THE PROFESSIONAL DOCTORS AND NURSES. DON'T UNĎERSTAND....KATHY BATES. THANK YOU !
Thank you for telling your story. At 36 in 2018 I got a bilateral mastectomy, lost 16 Lymph Nodes. My radiologist discovered my Lymphedema. I’m Stage .2 & suffer every day. It is hard but we have inspirational women like yourself educating us!! ♥️♥️
Sorry to hear about that. My sister has Lymphedema too. I feel you. Praying for you. How are you going about it?
God Bless Kathy for leading with her heart to reach others who will never meet...she truly is an Angel in Training who is battling health challenges like so many of us are!!!
Kathy, when are you going to the hill? I would like to attend with you if you can provide more details. Thank you!
Actress of substance!! Really want to hug her 💏 with such physical misery in her life, no punk intended!
Lymphadema is curable only if the person is wiling to go outside the BOX OF CONVENTIONAL MEDICINE. There are so many natural remedies out there but the most important is to seek out a spiritual healer that will help you heal all your INNER CHILD WOUNDS 🙏 ✨
I have had my fingers swell for years I told my dr.a year ago My right leg was noticeably bigger than my right leg. Finally I was told I have this I can’t spell it yet or spell it yet . I was told once I get a specialist to explain hard I have worked to get the swelling down. I was told to wrap my leg no instructions or what to use, keep my leg elevated above my heart. I seen on a TH-cam to lay on my back with my legs going up the wall at least 20 minutes. Another TH-cam said it’s important about what I eat, I got this as another symptom of my long haul Covid-19 I got Covid 19 October 27, 2020. I didn’t realize this at first I don’t have cancer never have had cancer. I think the ones who died were lucky if they were going to heaven. This Covid is one that Justus keeps giving ! I hope I can find some support threw this group.
I just found out I have Lymphedema in my legs, both primary and secondard. I believe I got it after my total knee replacements. My right leg isn't affected as much as my left, my left knee got infected after the replacement, had two additional surgeries since then. Was only told to wear compression socks, knee high, 20-30 mmHg. I looked it up, and know to keep my legs moisturized now, and am at a loss of what else I can do.
Same hear. This is exactly what happened to me after having five total replacements. But the lymphedema got worse after having covid-19 pneumonia now I can barely walk my legs are heavy like lead. Hope all is well with you today thanks for sharing
@@carlawilliams8136 So sorry to hear this. I wear compression socks every day, the one time I don't I notice my ankles starting to swell, and know I am starting to hold water. I have also started a Ketogenic way of eating, 17 months ago now, and have dropped more than 81 pounds, which has helped tremendously. Dr. Ken Berry has many you tube videos, I know he has at least one on Lymphedema.
I have Lymphedema in both legs after receiving life changing injuries in a motobike accident. I can't afford to pay for private drainage treatment so am at a loss to know what to do. My legs are huge, especially the calf areas. I have had to buy size 24 trousers and take them in 6inches at the waist cos I need the leg size. I have to buy size 8 shoes even though I'm a size 4 as my feet are so swollen. I hate this, I am afraid of the future. I feel like a freak.
Beautiful. As a musician with lymphedema, I'm in the public eye and never hide my compression garment. I've been on television (even at the White House) wearing one. People ask what it is, and I am always open to educating. Folks don't realize how much time and money is spent on this incurable disease, as well as the mental issues that go along with it. My arm has not seen the light of day in years. I have to do manual lymph drainage daily, use a pump when needed, exercise and keep an anti inflammatory diet to be able to continue my career - and had adaptive equipment built for my instrument on stage, as well as keep a spare horn in my studio that is resting artfully in a cup that is attached to a cane, so that my left arm has less burden while I practice daily. I travel often and, carrying heavy equipment and flying on top of everything else is a serious burden to my arm. I try to encourage others to not hide their garments. We need to be seen. If more of us were out there with our compression/wraps, more people would realize that we are not just a few people with this disease. There are so many of us. It's too easy for us to be ignored, currently. Thank you, Kathy - you are a personal hero of mine. I've always loved your acting, but now, I know that I have always loved you as a human, too.
When you go to Congress in Washington I want to be with that group. I am now learning about this disease and it is mild yet some doctors want to give me pumps which is like putting the cart before the horse. Thank you for what you do.
From what I understand there is no insurance coverage for treatment and devices.
That's true,insurance will pay for the visits to the occupational therapy place and all the wrapping,but will not pay for any kind of compression garments. I have lymphedema in both my legs and ankles. They want me to wear compression wraps everyday and at night at a cost of $400 a pair. It sucks but what are you going to do.
This WAS like someone get it...i have. Myxfoibrosarcoma cancer the doctor advise me of all the things that could happen after my surgery but never said a word about lymphedema wow I was recovering from my surgery I had an open wound things were going well. It was set and I start developing this swelling and it got worse and that's what I've been dealing with I haven't been able to even close to him yet the swelling is so bad I have been you know looking at things trying to learn what I can do listening to TH-cam so this is very educational and I'm like you Cassie I got really mad I thought I was doing good and then this came and I'm like why didn't they tell me this could even happen so I can prepare myself they don't tell you and now I have this and I know I've got to live with this chronic illness now but at the same time I've got to heal from the cancer as well so I'm mad too
Become a member for five dollars… why? Will I get more info for self care you’re not giving me here?
The info in hearing in this video is heart wrenching and I am also mad as hell. My daughter suffers from both lymphedema and lipedema. She suffers seriously and has ran out of who to go to. She even had a Drs office call her the day before she was to have her appt and they told her don't come, were cancelling your appt because we don't know what more we could do for you than what's already been done. She felt defeated and basically like they told her just stay home and die. She recently had weight loss surgery. About a month later her swelling was seriously worsened, her calf was the size is a person's head. she got blisters on back of her right calf that began leaking and got a serious infection. Long story she was hospitalized and her with double antibiotics because she went into cellulitis. To many people have shut the door in her face. And the people who stare, make rude comments and the children pointing fingers, is destroying her heart. She was told also she can never have children. Reasons may not be related but I totally agree, we need to have more awareness and find a cure for this. She wants to be a player child to help the with the research with this. If you can help us we'd be eternally grateful. I'm here mom, Vicki Berry, daughters name is Kristi Rist. If there's any thing you can do, please reach out to me and I'll get back with you asap. Thank you in advance.
she is one of my absolute favorite actresses!.... I just love her and I hope she will find a way to heal 100%....infect I wish she would find Anthony Williams the Medical Medium, he has helped so many people to heal completely....
GOD BLESS KATHY...I HAVE IT AFTER DOUBLE MASTECTOMY - THE SURGERY...AND THE NEGLECTED LYMPHEDEMA AFTERWARDS MAKES ONE FEEL 'THE PARTY'S OVER BIGTIME. ITS EASIER FOR ME TO TYPE IN CAPS AS RIGHT, WRITING HAND AND ARM INOPERABLE WHILST SO SWOLLEN!
I was diagnosed with lymphedema around the holidays this year and I know pretty much what it is and the surgeon that preformed a botched vascular procedure on my left leg. I am upset and beyond torn apart inside both near the lymph nodes biologically and emotionally.
Wow Kathy I always love your work. I love what you said in this video. It moved me beyond words. I was diagnosed with lymphedema back in July in my legs. Presently I wear a uniboot on both legs . And I do physical therapy for my back and knee. My physical therapist gives me exercises to strengthen my legs. I was hospitalized for 5 days. Before I was diagnosed my legs were in horrible condition. Sometimes I have pain in my legs. God Bless you Kathy.
Sue Thomas FBI/
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Sue Thomas FBI//
Sue Thomas FBI/Eye
Money raised from Cancer Awareness should be used towards Lymphadema.
I had Breast cancer in 1994 with a lumpectomy on my right breast....Ten years later I
was kite flying with my kids and the kite grabbed wind that pulled my right arm very hard...
I felt the fluid literally flow down my arm and I was in shock....I have gone through the
massage and I wear a sleeve every day....I'm mad as a wet hen that I had to throw away
dresses that I can no longer wear....If only the Doctors had warned me, I would never have
gone kite flying...I feel sad that information has not been shared with patients....Thank you Kathy for bringing this to the "forefront".....
My best wishes for you.
I have this and thankfully my lifestyle has accidentally mostly kept in check until recently which lead me to discover I have it. Menopause and retirement caused me to have worse symptoms. Retirement..I have no need to stand for ten hours a day but I still am active but apparently I have to be incredibly active, like an athlete all,day long..which is unsustainable and I have no interest in riding a bike or standing all day doing what? I paint nde make art and I was so ex to finally have time..so here I am learning how to water color and needle felt and I’m swelling up with pitted edema and I’m thinking wow menopause is brutal until I really swelled up , fifteen lbs in three weeks in top of the twenty I slowly put on… wth! But sadly I don’t have healthcare so I am stuck trying to figure this out for myself so a hospital doesn’t end up owning my only possessions.
My grandma has Lymphedema and I need help
I'll be there with you in DC!!!
Kathy is a Godsend! Bless U!
I have to say I am glad I found this video. I have seen some really bad situations with Lymphedema so I understand her worries at the time. I have Secondary Stage 3 Elephantids in both legs toe to hips. I went 18 years undiagnosed and even during that time especially the first 5 years when I was in constant pain, I have been lucky to not have weeping or cuts. I have had scrapes which luckily stopped in a few hours but Nothing like what I've seen can happen. Since I was diagnosed I have put all my time into learning everything I can about this Illness and trying to get Nursing, EMT, and Doctors in training to have more knowledge of not only what it is, what it looks like, and how to treat it. Most people get 60 minutes of training on Lymphedema unless they know someone who has it. Leaving the Field very thin with specialist. Nice to see Learn has such a great spokes person and keep up the great work.
My mother has lymphedema. It's 3 years since her leg has been swollen. I have read the symptom about it and they say that a long time with lymphedema without treatment will cause lymphangiosarcoma. So is that true? What percentage of causing this disease? I live in vietnam where lymphedema is not popular and there is no treatment about it. I am very nervous about her disease. How must i do know? Please lead me some solutions with it, thank you!
i will go with you to congress! i will stand with you! i suffer from this myself. god bless you lovely lady
Thank you Kathy Bates!
Madam iam from india and my mother is suffering from sever lymphedema her both legs got swelling and she is not able to walk so plz help my mom and suggest her plz mam my mother is my life and she is crying by seeing her legs plz reply to me mam thank you
I’ve been dealing with lymphedema in my left leg since I was a kid (it runs in my family). Finding a PT has been a pain. Currently waiting on a call back from a local PT program. Wish me luck! 🙏🏻
I got horrible treatment. I suffer everyday.