My condition was overlooked for nearly 20years until it disseminated and many of my body systems started failing simultaneously. The reason my morphea went unrecognized is because the initial presenting feature was en coup de sabre.. but on the top/back of my skull rather than the forehead. My Drs insisted it was "nothing" for 20years even as it got larger and more indented. I've been measuring and photographing the lesions/atrophy over the years just to prove to Drs that I'm not imagining it. One Dr literally said "how do I know your body hasn't always looked like that?" And when I produced the photos to show them they refused to look and walked out of the room saying it's "just my anxiety".. Photograph EVERYTHING people. Even if you don't think you'll need it now you might need it in the future. These Drs (at least at prestigious u of Michigan..) do not care whatsoever. It's too hard for them to say "I don't know" but it's apparently easy ASF for them to belittle and neglect people. After 2 years of asking my TMJ specialist whether I could have hemifacial atrophy and measuring the changes myself with measuring tape (all the while she told me "no you don't have that, that's so rare.." as the entire justification for why I couldn't have it..), fast forward now two years later she finally ordered a CT scan and referred me for reconstructive surgery immediately.... Now I'm supposed to trust the same people to repair my body who spent my lifetime neglecting and gaslighting me. I even underwent extensive psychiatric treatment because I BELIEVED that it was all in my head(so to speak).. only to find out later I was right all along and the Drs were simply running me in circles. I'm curious whether it's such a rare disease that they can't recognize it or there's no treatment anyways so they didn't feel the need to bother trying until it's to the point where I need multiple reconstructive surgeries? Is it going to still keep progressing after the surgeries, are those pointless too?? When I saw the ENT surgeon for a surgical evaluation I asked why is this happening to my face and she literally shrugged and said in a sarcastic/condescending voice "you're still pretty", even though that's the least of my f***ing concerns.. every time I go to the Dr I literally feel like the Joker in that movie when the social worker tells him "they're never going to care about people like you"
How terrible. Shows you need to consult skin conditions with a BOARD CERTIFIED dermatologist. Other doctors don't know this disease and some, especially in the US and other third world countries, will pretend to know and advise their treatment. As you can see from this lecturer, she is one of the doctors who knows this disease and makes an effort to educate patients.
Please find a different Dr if they don't listen. And listen to your gut feeling. Never back down, and gently repeat your concerns. Ask for a referral to another dermatologist if you don't get the help /answers you deserve. There is NEVER AN EXCUSE for bad doctoring
It usually end up taking many years to find a good knowledgeable doctor who also has empathy and compassion. And there aren’t many doctors like that anymore!
I am a doctor and I knew so my patients with scleroderma, it's an aggressive disease , life ruiner I feel for you not just as physician but also as a woman with two autoimmune diseases other than scleroderma
Thank you so much for this presentation. It was very clear and answered my questions, particularly of morphea progressing to systemic. My sister was diagnosed as having rheumatoid arthritis when in fact it was systemic scleroderma and died approx 7 years after diagnosis. I was recently diagnosed with localized morphea, and concerned it would progress to systemic. Again, thank you for this informative presentation.
I was dx with this 20 years ago. Eventually it settled and I was told there’s nothing they can do. Three years ago I was dx with Multiple Myeloma. This is an incurable blood bone cancer. Since this dx it has come back and it seems stronger this time.
I have had linear morphea since I was 13 and I'm now 40 drs never knew what to diagnose me with. My 15 yr old daughter now has it and I feel so bad for her. They told us there's no treatment for it. 😟
I just developed hemifacial atrophy with morphea like plaque and I’ve been treated for late stage Lyme by both an infectious disease doc and Lyme-literate rheumatologist within the last three years. I live in US. Lyme specific bands were P39 and P28.
This os one of the best videos I've seen on the subject. Ive had Raynauds for years which went undiagnosed. Now, in addition, I have intense itching, pseudo-vitiligo all over, GERD, skin texture is no longer supple and soft, tiny red spots have started to appear on my face. Thw worst is the Raynauds (I live in a cold country), itching especially at night and the skin discoloration (no more bathing suits for me). No joint pain or fingernail problems at this time. What are your thoughts?
I was diagnosed with arthritis and morphea when I was 12. I was put on steroids and then eventually methotrexate. Luckily I decided to get off the methotrexate and now I’ve just got my fingers crossed!
I have Morphea on my entire left arm, shoulder, and on my upper left ribs. My left arm is so small and weak compared to the rest of my muscular body. It affects me everyday. I feel like a weakling when people see me from the left and strong and confident when people see me from the right. It is very noticeable. It’s like I have the arms of two different people on one body. I wish I could build muscle but the fibrosis in the muscles caused by the Morphea makes it impossible. It developed when I was a child. I wish I never got it. If there is anyone out there who sees this and knows how to promote muscle growth in an arm with Morphea please tell me 😔 Update May 2022: It is now spreading to my right arm and I don’t know what to do. I have tried keeping it moisturized and using cortisone cream. I’m seeing my doctor this week and hoping they have some sort of treatment to stop the spread.
I actually diagnosed myself with localized (circumscribed) Morphea, and had my doctor confirm it (but they never recommended treatment). I have 2 spots on my back. Could this indicate other issues in the body and I seem to have a few illnesses and was told I have a Lupus Inhibitor when I was a teenager. I have had my 2 spots for several years now, is there any treatment to get rid of the discoloration to make it less noticeable for cosmetic reasons after I've had it for 4 years? I've also wondered if it is something that could be tattooed over (as I like tattoos). Great presentation! I'm not a doctor so I didn't follow everything but I learned a lot!
Hi Nichole, thanks for your comments. It's best not discuss personal medical information on an open platform like TH-cam. Please call (800) 722-4673 or email SFinfo@scleroderma.org.
Hi am Tylor, I really need some help, it was in 2017 when I was finishing up with my high school, when a started feeling some kind of itching on the center part of my head, I really didn't quite know what it was at first and what it would result to. Due to the itch I would many of times find myself scratching the spot, at that time I still hadn't shaved my hair. So when I first shaved it I noticed I had a hairless scar on the spot that felt the itch...but at this time it wasn't itching nor painful anymore... After about a month or so I then noticed a linear depression running from the scar at the center of my head down through my face, a bit deep....i was keenly following on each and everything u talked about, finding out it was the linear scleroderma, En coup de sabrea a Morphea subtype but apart from the itching at first have never felt any pain afterwards, it's has really been hard living this way... Please help me out...en I would really like to know if it's a progressive type... Plizzz help
I was diagnosed at 11 yrs old and was told eventually it can harden my organs. My mom had lupus which is the sister disease i was told. And i have other diseases as well. Its really hard to deal with not only physically but mentally as well
@@PrettyEyezT I'm sorry, no we were closed the Friday after Thanksgiving. However, if you left a voice mail, a member of the staff will return your call.
I think I have the weirdest Morphea out of all that I've seen online. I live in Jamaica and I got the bruise back in 2016. When I say bruise I mean it started as red spot on the back of my arm which eventually turned black. My hand started to swell which made me unable to make a fist. It took me one year for a diagnosis because the doctors kept on saying I had fungus and gave me fungus ointments. During this one year I was weak, my weight increased, I was easily confused and depressed with a lo of pain. After the year when I found out what it was. I started talking about 7 or 8 medications. It made the swelling of my hand when down til I could form a fist, however the arthritis is killing me. I have practice walking every morning I get up. Some days it doesn't bother me that much, however I am in a stressful job which is making it worst. I've stopped taking the medications for over a year because the side effects were too much for me to handle. I has been 3 years since it started and the rash is still growing. A part from the joint pain from the arthritis. I am now feeling bone pain. My muscles are deteriorating and my blood vessels are constricting. I can feel a cut from the middle of my forehead, down on one side of my nose to my chin. This cut is not visible though and I only feel it when I'm super stressed. I gave up on it because pursuing a fix will only give me false hope and that alone is stressful. Every now an then I might search the internet on Scleroderma which I just did and found this video. I almost forgot to tell you the length of my rash. It is now from my finger tip to my back on the same side as my heart which a small patch is now showing on the left side of my chest. If anyone have similar symptoms, let me know?
John Hopkins and the scleroderma Foundation in Baltimore Maryland call them. I am so sorry I hope I can find the time to read All of these. The problem is that it is so Rare you have to see a doctor that deals with this awful Auto immune Diseases (Everyday). I hope and pray I'm able to make it to my appointment at John Hopkins next month. I was 8 when first diagnosed by my Parents Dermatologist. The first biopsy came back a health African American. I'm white / Caucasian with native Indian decent. The darkest skin person in my family. The second biopsy came back Scleroderma, Just Scleroderma. Atleast I was able to find out what it was. My pediatrician tried to convince my mother and myself, it was a "leaking bruise". It spread into half a dozen spots on my left abdomen that ran down my left leg. It's contained to the left side of my body. Like Someone drew a line that it couldn't cross over. It went into remission in my teens until something happened during the summer of 2020. I don't know what happened I just know that all of a sudden my fingers started turning white then blue then Red in 85 plus degree weather until I put my hands and fingers under hot water or in front of a heater. 20 mg of Viagra 4 times a day solved that enough to live with. It also helped the swelling in my legs go down after spending a Month in the Hospital to keep from losing my legs. The intravenous antibiotics slowly reversed the deep cellulitis infection that formed from all of the toxins that built up from the fluid buildup. I know this now but I didn't back then I wasn't even conscious when I arrived at the hospital with the temperature of 103. The trauma center hospital thought it was from a tick bite even though I tested negative for Lyme disease. There's too many details to mention I'm going to be late for a doctor's appointment I just wanted to say one thing before I end this message. I would still be suffering from rhinoids disease and there's no telling what would have happened by now if I had not started the Viagra to get all those toxins out of my legs. The point is I learned about taking salinophil / Viagra from watching videos released by The Scleroderma Foundation. I told my doctor to prescribe it to me otherwise I would still be having those problems that had turned chronic. I've got a book of other issues, but I just wanted to say don't give up and be your own Healthcare advocate for the time being. Keep watching these videos when you can go to the Scleroderma Foundation page and clicked under videos keep following them down until you see something that applies to all of you because Normal Doctors and even specialist don't know unless they are Scleroderma specialists you might get lucky with a rheumatologist or even dermatologist but you're never going to get the help you need any of you until you go to John Hopkins or the Scleroderma Foundation in Baltimore Maryland if you're on the East Coast in the United States. They are the only doctors and scientists that see people with this Disease on a daily basis. I've had dozens of doctors and specialists tell me that I know more about this than they ever will. It's not (All of) their fault. I still believe (some of them) still care. They just don't have time to learn enough about this Disease to make a huge difference for just one patient in most of their approximately 30-year careers. This is why the Scleroderma Foundation and all of their Videoed seminars are so important to All of us. Without the ability to watch these recorded seminars I honestly don't believe I would still be here right now. There's also another video seminar Channel that's spelled something like SRUCK or we are SRUCK I'll have to come back and edit I may have added an extra letter but I'm sure it's from the UK. Please excuse my Grammar and punctuation I wanted to at least finish this in a reasonable manner before leaving. Don't forget what I said write down medications they talk about that concern the exact type of symptoms all of you are having and if you can take it to the best autoimmune disease rheumatologist you can find in your area until you can get to a Scleroderma specialist if it is debilitating your life like it is mine. There's a good chance if you take the information provided even a common MD can possibly help by prescribing some of these medications like the Viagra did for me. In case people don't know Viagra was originally designed for arterial artery disease it has been advertised the way it has only because of one of the side effects and how much more money they were able to make because of how helpful it turned out to be for Healthy People That could and would pay whatever it cost to help them with that type of problem Ect. (Will edit better later) May God Bless You ALL 🙏
I have morphea localized on the skin ( belly ) and they are 2 spots and the 3rd started to be more , I have it from 10 years ago , I went at the doctor only this year 2018 but still I have the same spots . I used cream only .
The brown patches of skin can sometimes fade naturally when the disease is in an inactive state. Your rheumatologist can also prescribe topical therapies that can be used to help fade the pigmentation.
@@dermlover1 Yes, it can be one of several options for individuals living with scleroderma. I would be happy to connect with you via email at sfinfo@scleroderma.org to share more information.
My scarring from a large active patch on my left hip is still hyper pigmented and very hard underneath even giving hip joint pain 13 years after the skin scarred over.
Am also suffering from since 8years . I have 2 spots on my thighs and waist. It's increasing. 😥. Am so much worried about this disease. My daughter is 4 years old. I used lot of medicines. Consult no of doctors. Spend money. No use. Mentally disturbed.
My 13 year old daughter was diagnosed last week, she has it on her forehead and shoulder. Blood test and tissue sample done and MRI to come. I’m scared for her.
I'm like the only person to have morphea at the clinic I go to. It's taken 2 years to find out this is what I have. I've been given a vitamin D substitute cream to deal with it which I'm not so sure about. I've got it quite wide spread. I'm trying to figure out the next treatment plan to get the most benefit.
Hello Sandhyarani, it is possible to have two different autoimmune diseases overlap. I would recommended that you consult your rheumatologist about the Anti ds DNA test results for more information.
please contact sfinfo@scleroderma.org. Also, please note that the Scleroderma Foundation is not a medical institution and cannot provide medical advice regarding an individual's health. You must seek out the advice of a physician. You can find Scleroderma Research and Treatment Centers located in the United States on our website, www.scleroderma.org/centers.
Plz help I have morphea in my chin but i dont know what type is? i had this since 6 years when i was 15 years old and now i am 21 year old initially it was a spot and gradually it reduced fat of my chin but it have been stopped since 3 years ago and its not progressing but i am wondering a lot about its type and as u mention it will rerturn again plz tell me something
its BAK, this is clearly an educational video, NOT an offer of free, individual medical assessment and advice! *Especially NOT* through freaking TH-cam comments! 🤦♀️ If you care about your health, don't rely on public comments on a media sharing platform! Go to see an actual *DOCTOR* ASAP !!!
I have morphea i don't know what type it is but my doctor give me 7 injections of penicillin, Is penicillin a cure for morphea? If not what should i take
Please contact sfinfo@scleroderma.org or call (800) 722-4673 to learn about morphea. However, questions about treatment can only be answered by a doctor. It is unethical for the Scleroderma Foundation to give medical advice. To find a scleroderma research and treatment center, please visit www.scleroderma.org.
OMG, TY so much, i have been having these symptoms for over 5 years. some Dr call it hydrodentious, others swear it was not, but NONE of them can figure it out... but this IS what i am having, mother and i have auto-imune disorder, she had thyroid problems (overactive verry thin, her body not the thyroid) . i there is systemic growths pushing back and forth through the skin some are 8 - 10 in long(elastic in nature verry elastic almost like rubber band) gana mak shure my SR watches this \
Hye if you dont mind can i ve you ig account? So we can contact each other over there. I ve twin sister who suffered the same disease. Im from malaysia. And i interested to know how the disease affecting you since the beginning up until now.
I have a diagnose Morphea. My doctor said that one of my treatment will be antibiotic penicillin. Is it effective in this desease? I live in Ukraine and suppose that we have old methods in treatment.
Hi Irene, thank you for your question. The Scleroderma Foundation is not a medical institution and cannot give medical advice. We do however have a wealth of information about the disease and available treatments on our website and in published brochures. Please see this brochure that should prove helpful to your understanding. www.scleroderma.org/site/DocServer/Localized.pdf?docID=317
I was diagnosed many years ago and was told by the best doctors at great Ormond street hospital that it can’t be cured but treated I’m afraid. Hopefully sometime in the future it will get a cure
@@firelordcole3975 Hi Cole even I got the morphea recently on my face. currently I am 22 years old can you please tell me how it got cured to you and what time and the treatment that it takes to get cured and also can you tell me about the side affects of it. Please reply to this... Thank you...
@@naimajavaid5326 The doctors here don't know a cure either. Mine is also on my forehead, and there's even one on my scalp that made be bald in that spot.
I too have Morphea, it's indented my left side of torso near breast. I now have new lesions under my arm left side of chest and my whole left breast, stomach and small light ones starting on the outside of my leg. 😞 I'd like to have sex w out feeling embarrassed or being asked if I've been beat. Being so dark skinned does help, I think it's hard for white doctors to tell on African American skin, thank God the biopsy helped them to determine. Best of luck to all of you
Scleroderma, in its different forms, has no cure at this time. Medical science is working diligently with funding from the Scleroderma Foundation, the federal government, and other organizations to discover the cause, understand the mechanisms, and overcome the disease once and for all. At the same time, the Scleroderma Foundation works with individuals and families affected by the disease to help them learn to cope through mutual support programs, peer counseling, physician referrals, and educational information, including our annual National Patient Education Conference, which is taking place July 19-20-21, 2019 in Chicago. Visit www.scleroderma.org/conference to learn more, or call (800) 722-4673.
Jai Shri Krishna Radhe Radhe 🙏🙏💐💐 namaste ji Sir ji my name is shaila (f ) and I am leaving from India my age 33 years old Sir ji mujhe 5 year se Morphea ki bimari he or Mera face (chehra) bichmese bat Gaya he dabgaya he please mujhe bataiye iska ilaj kya hai mujhe Kya chij khana chahie aur kya cheez nahi khana chahie please sir bataiye🙏🙏🙏🙏🙏🙏🙏
It was a good class but she’s a little puffed up. I was diagnosed last year. 33 years of them saying I was lying. I have systemic scoliosis. I was so mad at those other doctors. All that time.
Desafortunadamente, no tenemos los recursos para traducir todo el video. Sin embargo, tenemos un video grabado en español. th-cam.com/video/NbTQywwgYBI/w-d-xo.html
It's effective for some people. It is safer than the oral/IV medications. Light therapy is time consuming but easy. I had to do it twice a week for months.
I've had morphea since I was a kid. It's horrible, mine is very severe. There's very few I found online worse than mine. I've decided since I was 13 I would kill myself.
My condition was overlooked for nearly 20years until it disseminated and many of my body systems started failing simultaneously. The reason my morphea went unrecognized is because the initial presenting feature was en coup de sabre.. but on the top/back of my skull rather than the forehead. My Drs insisted it was "nothing" for 20years even as it got larger and more indented. I've been measuring and photographing the lesions/atrophy over the years just to prove to Drs that I'm not imagining it. One Dr literally said "how do I know your body hasn't always looked like that?" And when I produced the photos to show them they refused to look and walked out of the room saying it's "just my anxiety".. Photograph EVERYTHING people. Even if you don't think you'll need it now you might need it in the future. These Drs (at least at prestigious u of Michigan..) do not care whatsoever. It's too hard for them to say "I don't know" but it's apparently easy ASF for them to belittle and neglect people. After 2 years of asking my TMJ specialist whether I could have hemifacial atrophy and measuring the changes myself with measuring tape (all the while she told me "no you don't have that, that's so rare.." as the entire justification for why I couldn't have it..), fast forward now two years later she finally ordered a CT scan and referred me for reconstructive surgery immediately.... Now I'm supposed to trust the same people to repair my body who spent my lifetime neglecting and gaslighting me. I even underwent extensive psychiatric treatment because I BELIEVED that it was all in my head(so to speak).. only to find out later I was right all along and the Drs were simply running me in circles. I'm curious whether it's such a rare disease that they can't recognize it or there's no treatment anyways so they didn't feel the need to bother trying until it's to the point where I need multiple reconstructive surgeries? Is it going to still keep progressing after the surgeries, are those pointless too??
When I saw the ENT surgeon for a surgical evaluation I asked why is this happening to my face and she literally shrugged and said in a sarcastic/condescending voice "you're still pretty", even though that's the least of my f***ing concerns.. every time I go to the Dr I literally feel like the Joker in that movie when the social worker tells him "they're never going to care about people like you"
YOU ARE NOT BY YOUR SELF.
I am so very sorry that this has happened to you also 😢
How terrible. Shows you need to consult skin conditions with a BOARD CERTIFIED dermatologist. Other doctors don't know this disease and some, especially in the US and other third world countries, will pretend to know and advise their treatment.
As you can see from this lecturer, she is one of the doctors who knows this disease and makes an effort to educate patients.
Please find a different Dr if they don't listen. And listen to your gut feeling. Never back down, and gently repeat your concerns. Ask for a referral to another dermatologist if you don't get the help /answers you deserve. There is NEVER AN EXCUSE for bad doctoring
It usually end up taking many years to find a good knowledgeable doctor who also has empathy and compassion. And there aren’t many doctors like that anymore!
I wish I could live one day without this disease and know what that would be like
@@michealcollins5650 is this true??
I am a doctor and I knew so my patients with scleroderma, it's an aggressive disease , life ruiner
I feel for you not just as physician but also as a woman with two autoimmune diseases other than scleroderma
I hope scientists can find a medication to stop the collagen over production in our skin. 🙏🏼
Thank you so much for this presentation. It was very clear and answered my questions, particularly of morphea progressing to systemic. My sister was diagnosed as having rheumatoid arthritis when in fact it was systemic scleroderma and died approx 7 years after diagnosis. I was recently diagnosed with localized morphea, and concerned it would progress to systemic. Again, thank you for this informative presentation.
I hope scientists can find,create a medication to slow down the progression of the collagen over production in our skin. 🙏🏼
Wow wish Id seen this when I was first diagnosed
Me too.
I was dx with this 20 years ago. Eventually it settled and I was told there’s nothing they can do. Three years ago I was dx with Multiple Myeloma. This is an incurable blood bone cancer. Since this dx it has come back and it seems stronger this time.
Thank you for making this understandable for us.
I have had linear morphea since I was 13 and I'm now 40 drs never knew what to diagnose me with. My 15 yr old daughter now has it and I feel so bad for her. They told us there's no treatment for it. 😟
I just developed hemifacial atrophy with morphea like plaque and I’ve been treated for late stage Lyme by both an infectious disease doc and Lyme-literate rheumatologist within the last three years. I live in US. Lyme specific bands were P39 and P28.
Thank you SO much for this video🙏🏾🥰
Excellent presentation
I have it unfotunetly too!!!spreading everywhere
I have too
i have too 😭
stress killing me, i don't know what to do
Me too its really depressing
I have too 😢
I developed morphea and hemifacial atrophy right after I was diagnosed with late stage Lyme. I’m in the US.
This os one of the best videos I've seen on the subject. Ive had Raynauds for years which went undiagnosed. Now, in addition, I have intense itching, pseudo-vitiligo all over, GERD, skin texture is no longer supple and soft, tiny red spots have started to appear on my face. Thw worst is the Raynauds (I live in a cold country), itching especially at night and the skin discoloration (no more bathing suits for me). No joint pain or fingernail problems at this time. What are your thoughts?
I was diagnosed with arthritis and morphea when I was 12. I was put on steroids and then eventually methotrexate. Luckily I decided to get off the methotrexate and now I’ve just got my fingers crossed!
What you do for arthritis and morphea
Pllzz... You should give the information about morphea treatment.....
I have Morphea on my entire left arm, shoulder, and on my upper left ribs. My left arm is so small and weak compared to the rest of my muscular body. It affects me everyday. I feel like a weakling when people see me from the left and strong and confident when people see me from the right. It is very noticeable. It’s like I have the arms of two different people on one body. I wish I could build muscle but the fibrosis in the muscles caused by the Morphea makes it impossible. It developed when I was a child. I wish I never got it. If there is anyone out there who sees this and knows how to promote muscle growth in an arm with Morphea please tell me 😔
Update May 2022: It is now spreading to my right arm and I don’t know what to do. I have tried keeping it moisturized and using cortisone cream. I’m seeing my doctor this week and hoping they have some sort of treatment to stop the spread.
I have morphea to and I have many questions abou it
Yo dude, you can message me
Please if you have find any solution please share with me as I also have same problem
@@aitwayagher8605 I am also have morphea please help me
@@vivekr5108 Hello there, I wish you all the best, how are you
Thanks
I actually diagnosed myself with localized (circumscribed) Morphea, and had my doctor confirm it (but they never recommended treatment). I have 2 spots on my back. Could this indicate other issues in the body and I seem to have a few illnesses and was told I have a Lupus Inhibitor when I was a teenager. I have had my 2 spots for several years now, is there any treatment to get rid of the discoloration to make it less noticeable for cosmetic reasons after I've had it for 4 years? I've also wondered if it is something that could be tattooed over (as I like tattoos). Great presentation! I'm not a doctor so I didn't follow everything but I learned a lot!
Hi Nichole, thanks for your comments. It's best not discuss personal medical information on an open platform like TH-cam. Please call (800) 722-4673 or email SFinfo@scleroderma.org.
May I get your what s up number
Hi am Tylor, I really need some help, it was in 2017 when I was finishing up with my high school, when a started feeling some kind of itching on the center part of my head, I really didn't quite know what it was at first and what it would result to. Due to the itch I would many of times find myself scratching the spot, at that time I still hadn't shaved my hair. So when I first shaved it I noticed I had a hairless scar on the spot that felt the itch...but at this time it wasn't itching nor painful anymore... After about a month or so I then noticed a linear depression running from the scar at the center of my head down through my face, a bit deep....i was keenly following on each and everything u talked about, finding out it was the linear scleroderma, En coup de sabrea a Morphea subtype but apart from the itching at first have never felt any pain afterwards, it's has really been hard living this way... Please help me out...en I would really like to know if it's a progressive type... Plizzz help
I have morphea and it feels a relief seeing this video. Well do you have development for the cure?
I have it on my right arm and right leg.
Thank you for your comment. To safegaurd your personal health information, please send questions to SFinfo@scleroderma.org. Many thanks,
Sir mujhe Hindi me moraphiya ki jaankari aur iska ilaaj batayaen
@@SclerodermaUS please tell me how to cure Morphea skin problem
I have all of this and covered from head to toe front and back 😢
I was diagnosed at 11 yrs old and was told eventually it can harden my organs. My mom had lupus which is the sister disease i was told. And i have other diseases as well. Its really hard to deal with not only physically but mentally as well
Hi Queen T: Yes, it is really hard. Give us a call, please, at (800) 722-4673 and let's talk.
I will give you a call after thanksgiving on friday will u be available? They never looked at my fingers only did a biopsy so it makes me curious
@@PrettyEyezT I'm sorry, no we were closed the Friday after Thanksgiving. However, if you left a voice mail, a member of the staff will return your call.
What is the hours of operation so I dont call during non business hours. Thank you!!
@@PrettyEyezT 8:30 a.m. to 5 p.m. Eastern Time Monday through Friday.
My 3 brown circles on left arm don't seem like that big of a deal anymore compared to what could've been
My 13-year-old sister has chronic morphea, please help me for treatment. We don't know what to do😔😔😔😔
I think I have the weirdest Morphea out of all that I've seen online. I live in Jamaica and I got the bruise back in 2016. When I say bruise I mean it started as red spot on the back of my arm which eventually turned black. My hand started to swell which made me unable to make a fist. It took me one year for a diagnosis because the doctors kept on saying I had fungus and gave me fungus ointments. During this one year I was weak, my weight increased, I was easily confused and depressed with a lo of pain. After the year when I found out what it was. I started talking about 7 or 8 medications. It made the swelling of my hand when down til I could form a fist, however the arthritis is killing me. I have practice walking every morning I get up. Some days it doesn't bother me that much, however I am in a stressful job which is making it worst. I've stopped taking the medications for over a year because the side effects were too much for me to handle. I has been 3 years since it started and the rash is still growing. A part from the joint pain from the arthritis. I am now feeling bone pain. My muscles are deteriorating and my blood vessels are constricting. I can feel a cut from the middle of my forehead, down on one side of my nose to my chin. This cut is not visible though and I only feel it when I'm super stressed. I gave up on it because pursuing a fix will only give me false hope and that alone is stressful. Every now an then I might search the internet on Scleroderma which I just did and found this video. I almost forgot to tell you the length of my rash. It is now from my finger tip to my back on the same side as my heart which a small patch is now showing on the left side of my chest. If anyone have similar symptoms, let me know?
By reading your things, I understand that am your twin
John Hopkins and the scleroderma Foundation in Baltimore Maryland call them.
I am so sorry I hope I can find the time to read All of these.
The problem is that it is so Rare you have to see a doctor that deals with this awful Auto immune Diseases (Everyday).
I hope and pray I'm able to make it to my appointment at John Hopkins next month.
I was 8 when first diagnosed by my Parents Dermatologist. The first biopsy came back a health African American. I'm white / Caucasian with native Indian decent. The darkest skin person in my family. The second biopsy came back Scleroderma, Just Scleroderma.
Atleast I was able to find out what it was. My pediatrician tried to convince my mother and myself, it was a "leaking bruise". It spread into half a dozen spots on my left abdomen that ran down my left leg. It's contained to the left side of my body. Like Someone drew a line that it couldn't cross over. It went into remission in my teens until something happened during the summer of 2020. I don't know what happened I just know that all of a sudden my fingers started turning white then blue then Red in 85 plus degree weather until I put my hands and fingers under hot water or in front of a heater. 20 mg of Viagra 4 times a day solved that enough to live with. It also helped the swelling in my legs go down after spending a Month in the Hospital to keep from losing my legs. The intravenous antibiotics slowly reversed the deep cellulitis infection that formed from all of the toxins that built up from the fluid buildup. I know this now but I didn't back then I wasn't even conscious when I arrived at the hospital with the temperature of 103. The trauma center hospital thought it was from a tick bite even though I tested negative for Lyme disease.
There's too many details to mention I'm going to be late for a doctor's appointment I just wanted to say one thing before I end this message.
I would still be suffering from rhinoids disease and there's no telling what would have happened by now if I had not started the Viagra to get all those toxins out of my legs.
The point is I learned about taking salinophil / Viagra from watching videos released by The Scleroderma Foundation. I told my doctor to prescribe it to me otherwise I would still be having those problems that had turned chronic.
I've got a book of other issues, but I just wanted to say don't give up and be your own Healthcare advocate for the time being. Keep watching these videos when you can go to the Scleroderma Foundation page and clicked under videos keep following them down until you see something that applies to all of you because Normal Doctors and even specialist don't know unless they are Scleroderma specialists you might get lucky with a rheumatologist or even dermatologist but you're never going to get the help you need any of you until you go to John Hopkins or the Scleroderma Foundation in Baltimore Maryland if you're on the East Coast in the United States.
They are the only doctors and scientists that see people with this Disease on a daily basis.
I've had dozens of doctors and specialists tell me that I know more about this than they ever will.
It's not (All of) their fault. I still believe (some of them) still care. They just don't have time to learn enough about this Disease to make a huge difference for just one patient in most of their approximately 30-year careers.
This is why the Scleroderma Foundation and all of their Videoed seminars are so important to All of us. Without the ability to watch these recorded seminars I honestly don't believe I would still be here right now. There's also another video seminar Channel that's spelled something like SRUCK or we are SRUCK I'll have to come back and edit I may have added an extra letter but I'm sure it's from the UK.
Please excuse my Grammar and punctuation I wanted to at least finish this in a reasonable manner before leaving.
Don't forget what I said write down medications they talk about that concern the exact type of symptoms all of you are having and if you can take it to the best autoimmune disease rheumatologist you can find in your area until you can get to a Scleroderma specialist if it is debilitating your life like it is mine.
There's a good chance if you take the information provided even a common MD can possibly help by prescribing some of these medications like the Viagra did for me.
In case people don't know Viagra was originally designed for arterial artery disease it has been advertised the way it has only because of one of the side effects and how much more money they were able to make because of how helpful it turned out to be for Healthy People That could and would pay whatever it cost to help them with that type of problem Ect.
(Will edit better later)
May God Bless You ALL 🙏
I think we patients should join to find direct medicines against this disease. 🙏🏼🙏🏼🙏🏼🙏🏼
Yes
That was great.
I have morphea localized on the skin ( belly ) and they are 2 spots and the 3rd started to be more , I have it from 10 years ago , I went at the doctor only this year 2018 but still I have the same spots . I used cream only .
Do you have any hair loss problem? I am suffering the same problem
Does the hyper pigmentation resolve once morphea is resolved? Or will
The patient always have brown patches on their skin?
The brown patches of skin can sometimes fade naturally when the disease is in an inactive state. Your rheumatologist can also prescribe topical therapies that can be used to help fade the pigmentation.
@@SclerodermaUS Like hydroquinone? I’m a dermatology PA and trying to learn more to help my patients. Thanks!
@@dermlover1 Yes, it can be one of several options for individuals living with scleroderma. I would be happy to connect with you via email at sfinfo@scleroderma.org to share more information.
My scarring from a large active patch on my left hip is still hyper pigmented and very hard underneath even giving hip joint pain 13 years after the skin scarred over.
Thank you so much!
Am also suffering from since 8years . I have 2 spots on my thighs and waist. It's increasing. 😥. Am so much worried about this disease. My daughter is 4 years old. I used lot of medicines. Consult no of doctors. Spend money. No use. Mentally disturbed.
My 13 year old daughter was diagnosed last week, she has it on her forehead and shoulder. Blood test and tissue sample done and MRI to come. I’m scared for her.
Hi David: please visit www.scleroderma.org for information and contact our office at SFinfo@scleroderma.org or call (800) 722-673.
Hi,I live in Bangladesh.I was alrady suffering morphea.Now how I can contact.
I'm like the only person to have morphea at the clinic I go to. It's taken 2 years to find out this is what I have. I've been given a vitamin D substitute cream to deal with it which I'm not so sure about. I've got it quite wide spread. I'm trying to figure out the next treatment plan to get the most benefit.
I have mixed morphea with Anti ds Dna positive. Doed it mean i have more than one auto immune disease ?
Hello Sandhyarani, it is possible to have two different autoimmune diseases overlap. I would recommended that you consult your rheumatologist about the Anti ds DNA test results for more information.
I am really worried and depressed
I was as well but luckily there's lots of treatments.
@@dreadrea3265 which one?
I was diagnosed with Morphea a few days ago but the Dermatologist did not say what kind-localized or systemic. Im assuming it's just localized.
How are you now with morphea after three years?
Hi, i am sunil from india
I am morphea patient. I want to consult regarding my morphea plz share contact with me
please contact sfinfo@scleroderma.org. Also, please note that the Scleroderma Foundation is not a medical institution and cannot provide medical advice regarding an individual's health. You must seek out the advice of a physician. You can find Scleroderma Research and Treatment Centers located in the United States on our website, www.scleroderma.org/centers.
Plz help I have morphea in my chin but i dont know what type is? i had this since 6 years when i was 15 years old and now i am 21 year old initially it was a spot and gradually it reduced fat of my chin but it have been stopped since 3 years ago and its not progressing but i am wondering a lot about its type and as u mention it will rerturn again plz tell me something
its BAK, this is clearly an educational video, NOT an offer of free, individual medical assessment and advice! *Especially NOT* through freaking TH-cam comments! 🤦♀️ If you care about your health, don't rely on public comments on a media sharing platform! Go to see an actual *DOCTOR* ASAP !!!
I have morphoa how can I approach with u. I live in UAE 🇦🇪
Eşimin yüzü çöktü yardımcı olun😭
What is the treatment of scleroderma in pakistan
I have morphea i don't know what type it is but my doctor give me 7 injections of penicillin, Is penicillin a cure for morphea? If not what should i take
Please contact sfinfo@scleroderma.org or call (800) 722-4673 to learn about morphea. However, questions about treatment can only be answered by a doctor. It is unethical for the Scleroderma Foundation to give medical advice. To find a scleroderma research and treatment center, please visit www.scleroderma.org.
OMG, TY so much, i have been having these symptoms for over 5 years. some Dr call it hydrodentious, others swear it was not, but NONE of them can figure it out... but this IS what i am having, mother and i have auto-imune disorder, she had thyroid problems (overactive verry thin, her body not the thyroid) . i
there is systemic growths pushing back and forth through the skin some are 8 - 10 in long(elastic in nature verry elastic almost like rubber band)
gana mak shure my SR watches this
\
I have it too and now it is affected my internal organ 😔
Hye if you dont mind can i ve you ig account? So we can contact each other over there. I ve twin sister who suffered the same disease. Im from malaysia. And i interested to know how the disease affecting you since the beginning up until now.
@@syurga.hunter syazaainaasafirah
I have a diagnose Morphea. My doctor said that one of my treatment will be antibiotic penicillin. Is it effective in this desease? I live in Ukraine and suppose that we have old methods in treatment.
Hi Irene, thank you for your question. The Scleroderma Foundation is not a medical institution and cannot give medical advice. We do however have a wealth of information about the disease and available treatments on our website and in published brochures. Please see this brochure that should prove helpful to your understanding. www.scleroderma.org/site/DocServer/Localized.pdf?docID=317
@@SclerodermaUS hey
मुझे भी बहुत वर्षों से यह रोग है और मुझे सांस लेने में भी दिक्कत आती है
Where can I visit this Dr?
Dr, Pappas-Taffer is affiliated with the University of Penn & Penn Presbyterian Medical Center, Philadelphia, Pennsylvania
What is solution
I have morphea on my face under my left eyes , can it will be cured or not.
I was diagnosed many years ago and was told by the best doctors at great Ormond street hospital that it can’t be cured but treated I’m afraid. Hopefully sometime in the future it will get a cure
@@firelordcole3975 Hi Cole even I got the morphea recently on my face. currently I am 22 years old can you please tell me how it got cured to you and what time and the treatment that it takes to get cured and also can you tell me about the side affects of it.
Please reply to this...
Thank you...
Aurdu min bte plz
I just got my biopsy test results back and it says that I have linear morphea. We can't really go to the hospital right now because of lockdown..
@@naimajavaid5326 The doctors here don't know a cure either. Mine is also on my forehead, and there's even one on my scalp that made be bald in that spot.
I have linear morphea too! Mine is also on my face
@@jenniferhernandez6617 I have it too
I too have Morphea, it's indented my left side of torso near breast. I now have new lesions under my arm left side of chest and my whole left breast, stomach and small light ones starting on the outside of my leg. 😞 I'd like to have sex w out feeling embarrassed or being asked if I've been beat. Being so dark skinned does help, I think it's hard for white doctors to tell on African American skin, thank God the biopsy helped them to determine. Best of luck to all of you
Is this curable? I m also suffering for same
Scleroderma, in its different forms, has no cure at this time. Medical science is working diligently with funding from the Scleroderma Foundation, the federal government, and other organizations to discover the cause, understand the mechanisms, and overcome the disease once and for all. At the same time, the Scleroderma Foundation works with individuals and families affected by the disease to help them learn to cope through mutual support programs, peer counseling, physician referrals, and educational information, including our annual National Patient Education Conference, which is taking place July 19-20-21, 2019 in Chicago. Visit www.scleroderma.org/conference to learn more, or call (800) 722-4673.
@ritu..I’m also having the same ..since 2009
@@neham1661 hello
Scleroderma Foundation I live in the UK. Does this doctor offer phone consultations?
I hate this disease, sometimes I wanna kill myself
Jai Shri Krishna Radhe Radhe 🙏🙏💐💐 namaste ji
Sir ji my name is shaila (f ) and I am leaving from India my age 33 years old
Sir ji mujhe 5 year se Morphea ki bimari he or Mera face (chehra) bichmese bat Gaya he dabgaya he please mujhe bataiye iska ilaj kya hai mujhe Kya chij khana chahie aur kya cheez nahi khana chahie please sir bataiye🙏🙏🙏🙏🙏🙏🙏
It was a good class but she’s a little puffed up. I was diagnosed last year. 33 years of them saying I was lying. I have systemic scoliosis. I was so mad at those other doctors. All that time.
Is there a way to reach you out?
You may contact the Scleroderma Foundation at SFinfo@scleroderma.org, (800) 722-4673, or visit www.scleroderma.org. We operate within the USA.
SI PUEDES TRADUCIR A ESPAÑOL
Desafortunadamente, no tenemos los recursos para traducir todo el video. Sin embargo, tenemos un video grabado en español. th-cam.com/video/NbTQywwgYBI/w-d-xo.html
Phototherapy is effective ?????
It's effective for some people. It is safer than the oral/IV medications. Light therapy is time consuming but easy. I had to do it twice a week for months.
The CdeMexico help.
How get rid the black patches ? Will it go away ?
Syaza, please read this information, it should help answer your question. www.scleroderma.org/site/DocServer/Localized.pdf?docID=317
Oh god oh frick
Please bangali varsen
I've had morphea since I was a kid. It's horrible, mine is very severe. There's very few I found online worse than mine. I've decided since I was 13 I would kill myself.
Please contact our office at SFinfo@scleroderma.org or (800) 722-4673
Yo dude pm me
Please call suicide line!
It is horrible 😣😣😣😣😣