It's painful to hear her say, "Were going to be here for a long time" and now less than a year later shes gone. RIP Amy, you were such a lovely person. My condolences to your family and everyone close to you.
@@melissanichols5392 complications from eds. She was hospitalised for a long period with heart failure, pulmonary embolism, mast cell activation etc which also lead to general organ failure
I hope those horrible people who didn’t believe her feel terrible now. She died. Still think she’s “making it up?” Absolute shame on those people in the highest degree. RIP Amy. It broke my heart to hear we lost you.
@@sandrajeffery7005 No one feels guilty. Sadly this is the second person who had to pass away before people believed they were ill. Remember "Chronically Jaqui".
@@olivianovak4788 ye but still gone too soon same as chronically jacqui been taken too soon EDS Is such a cruel illness r.i.p jacqui and amy both gone too soon
Lisa Mccullough - ur quite right that people can be horrible... it has to be said that poor Amy in her vlogs always had a smile on her face (no excuse 4 calling her a faker tho) and even in her very last video she appeared serene - she was & still is an example to us all, sick & healthy alike
@@olivianovak4788 Not trying to say that they were faking it or anything, but Chronically Jaquie didn't die because of illness, she died due to complications from a very invasive surgery that multiple doctors initially refused to perform
The main thing is hey did start to fulfill those dreams when they could and that she lived life to the fullest she possibly could even with how poorly she was. It's such sad news but I did watch a video once she did about the TPN saying how it would only help temporary and at some point she would probably start to go into heart failure been on it long term. But it helped her in the time she had it and she managed to gain weight and become more healthy in that time which probably enabled her to survive a little longer.
They moved into their home I would say a year ago. That was her dream. To be independent on their own. I do believe they did that. Just sad they didn't have many many more years together. But in all honesty we don't know exactly what she had went thru this last year and half. Emotionally and physically. She tried so damn hard that we know.. I honestly didn't know that having to use a tpn wasn't good.. loved this girl. So many prayers and thoughts to her family..
I'm still in shock that Amy is gone. My deepest sympathy Tom & Family & her besties. Amy was an amazing, brave, strong, beautiful soul. She's helped so many in life. She's earned her wings & will always watch over you. My deepest condolences, Amy will be deeply missed 🕊🙏💜
true amy deffo gained her angel wings fly high angel you was so brave and had a beautiul soul and fought so hard rest easy amy sleep tight ams you earned your wings no more pain , suffering or tubes or medications r.i.p ams thoughts with sophie, chloe all your other friends tom and your family xx
@@melissanichols5392 Hi Melissa Amy passed April 1st this year from complications from her EDS & potential heart failure. She was in ICU. It was a terrible shock to everyone & I can say for me, I haven't been right since. Amy & I shared some of the same gastric diseases, POTS & Motility Disorder & she was a great inspiration to me. She's greatly missed. Tom posted something on her YT channel sometime ago. Her sister also posted something recently.
I literally just found out that she passed and i’m in shock. I’m so sorry to her family and tom for their loss. I’ve been watching Amy since 2017 and I just yesterday was curious why I haven’t seen her vids. Rest in peace gorgeous, I know you’re no longer suffering and that’s all anyone could ever want for such a sweet soul. 💖
Mel Thompson, a beauty community creator just passed away and I heard she suffered from EDS. I wish the awareness of the deadly and painful disease was made more aware by more people. Thank you for being brave and sharing your courage and journey with us. Sending everyone oodles of love.
I am so so saddened for your enormous loss. Amy was simply AMAZING!!! She touched my life so much by sharing her own struggles she made mine seem so small. My heart & prayers go out to Amy's entire family, friends & to the love of her life...her sweet boy, "Tom."
Even though I don’t have EDS, I really appreciate that you use your platform and voice to speak out and let people know that you can live with a chronic condition. You remind people (me included) that life still goes on and that you can be happy or at least carry on through the bad times and bad days. ❤️
Thank you so much for everything you have done, the support you have so many people to make us feel not alone. I have EDS, POTS and i'm now developing gastro issues too. I wouldnt have reached out to my doctor saying 'could this be EDS' had I not stumbled upon your channel. Now I'm slowly getting support to live a fuller life. You will be missed by us all so very much R.I.P angel xx
I still can't believe she's gone just few hours I found out about her death and I was upset when to work and I kept thinking about amy she wanted to live to be hear in this life she fought everyday despite all her chronic pain she always push forward..rest in peace beautiful..
I am so sorry to you Tom for the loss of Amy my thoughts and prayers are being sent your way of all the people that were close to Amy. I have been watching her for about 3 years now. Such a sad sad thing to lose her.
I miss her so much! I was so hopeful to meet her one day. Sending all my love to her fam. Please know she is most definitely not forgotten. She’s still giving me EDS strength, on the daily. We love you, Aims!
Girl, this pandemic and just sitting home feeling all this pain and not having my daily interactions to distract me from it is taking its toll on me too. I just keep telling myself it’ll be over soon, try and make the best of it. Trying to do small manageable projects at home (been organizing drawers, sorting old keepsakes, etc.) just time keep myself busy and productive, seems to be helping. So happy to see your face though Amy. You make me feel like someone else is going through this too, you’re not alone. 🤍🖤🤍🖤🤍
I don't have EDS, but love that you are spreading awareness as well as sharing your interabled relationship. I have been recently diagnosed with chronic vestibular migraines. It is nice to know that we arent alone.
She went through so much! I miss her. She's not suffering now.. I felt she had a good attitude through out the journey she shared with us. R.I.P. prayers to her loved ones 🙏❤
honesty breaks my heart that she’s passed, now do you people that said she’s faking it relapse it wasn’t fake. this was very real, she touched so many people including me. she got me through my 2 year long hospital admission without knowing it. i would check her social media’s daily for the past few months and i come onto youtube last week and saw she had passed and my heart genuinely hurts.
people that do thar aret worth worryig about their scum and dont have respect for amy i will stick up for in her memory now and honestly think that her legacy shall continue forever miss her videos r.i.p amy u was always loved by tom your family and followers no pain anymore rest easy much love to amys family and rest of her followers and tom and ellie, rest easy amy much love to u all xx
Who says she's faking it? I heard a few things one was that she caused a lot of health issues with her (alleged) eating disorder and that combined with complications from EDS (like infection from her central line) was what killed her. I have no idea if any of that is true but that's what I heard. As another young woman with a severe life limiting chronic illness, I'd rather believe her. RIP Amy. I wish you could've been my friend IRL.
Living with chronic conditions/pain is so hard and sometimes really gets me down but seeing people like you who have it worse and are dealing with it like a pro and living you’re best life is so amazing! Need to be more positive 🖤
All I literally just want to tell Amy is that I’m glad that she is a person that fights. In her shoes I would have given up, I couldn’t keep up with all her routines like that. She has a beautiful will to live and that’s why I love to watch her videos. Do you people agree?
eco2geek Yes it can be, there are many forms of EDS Syndrome, I have the worst one, Vascular EDS with extreme hyper mobility. If I wrote on here every fatal thing that I have happening in my life and the things that are going to cut my life short we would be here forever. But you just try to deal with it, I will tell you that the pain I have from morning til night is excruciating and debilitating. If you please for the sake of those that suffer this kind of thing...don’t be so flip about it. You never know what is around the corner for all of us. Have a great life, I truly mean that.
@@BlueBirdsSong I have my own issues -- that's why Amy Lee Fisher's channel got in my recommends -- but they're nowhere near as bad as hers or yours. I do have a tendency to be facetious, it is true. For example, I've told people that if anyone could "win" TH-cam for having the worst physical problems, it would be Amy. But the things she has to do on a daily basis just to stay alive are not funny at all. Pain is not funny. I guess being "flip" is just a way to deal with reality. Sometimes it offends people, but it's not meant to. Good luck and take care of yourself.
I was stabbed and left for dead, but I am still here. Everyday is a blessing. You never know what can happen. I'm strong and positive, you keep going girl! You are my hero ❤️
Hi there! My mom has EDS and along with EDS she has another genetic disorder thats called disominomia (sorry if i misspelled that.) Wich can be linked to EDS . I have some symptoms of both things but I don't know how to get tested for either thing. I'm 1 of 4 kids. So there's a 50/50 chance I could get one or both.
I have EDS and (compared to healthy people) an incredibly high pain tolerance, I'm used to ribs and vertebrae pretty much permanently being out but I dislocated my hip for the first time a few weeks ago and I literally couldn't roll over in bed the next morning to reach pain killers. I cannot imagine life dislocating my hip twice within two months, much less up to 50 times a day plus all your other problems. I hope you realise how fucking strong you are being able to function with and live through that
I was born at 6 months also but don't have any health problems. Realizing now how lucky I am to be healthy. Amy was a strong girl who fought a lot daily to just stay alive. May she rest in peace.
Still can’t believe you are gone Amy. You were such a positive leader & informant about EDS and invisible illnesses. You helped me and just know you helped SO many other people too. Miss you, you fabulous girl! 🖤🤍🖤🤍 Tom, I’m still sending you hugs, prayers and well wishes.
I have Classical EDS , I’ve had 2 children , I had my son before I had my diagnosis (took til I was 33 to get one) , I needed an emergency c-section but sustained nasty pelvic injuries , my son had clicky hips which can be a sign that the mother has EDS or indeed that the child does , he was fine . 4 years later I chose to have another baby but was monitored very carefully with a planned c-section at the end , things went well . My daughter does have EDS but copes really well , it doesn’t seem to affect her digestive tract like me ( I’m on TPN due to Gastroparesis) but she does suffer with reflux which is how I used to be . She has a fighting spirit that I’m in awe of , despite doctors and specialists advising her to give up dance she never did even after needing surgery on her feet . She did 4 years at uni and is now a dance teacher , I am so proud of her x
I suspect I have EDS, as I have several chronic illnesses/digestive autoimmune diseases an hypermobile joints. My son is even more hyper mobile than me and when he turned 3 I became concerned. He’s 5 now and more recently when he’s stood up, his hip has popped out of place for a second. He’s extremely hypermobile(we’ve already had to ER incidents with joints), has had severe digestive issues and reflux since birth along with other complaints. I’m 99% sure he has it. First few drs were like “oh yeah his joints are hypermobile,” but didn’t say anything past that. How did you receive a diagnosis for your children?
May you find the peace you deserve and know that many people whom you didn't know personally loved and thought alot about you. You will be missed. So many prayers to Tom and your family.
I can't believe she is no longer with us. To look at her, so beautiful to realize that she is gone. Tom, I want you to make a tribute to Amy; you were such a lovely couple. The world needs to grieve with you. I love you🙏✝️💕
I don’t have EDS but I feel the same way about having children because of my mental health issues that are hereditary. I couldn’t ever put another human through this. To me, no one deserves this shit. So my mental health issues die with me whenever that day may come. And I’m so glad my boyfriend also doesn’t want children. It makes living so much easier.
Heartbreaking to learn of Amys passing fly high sweetheart you are free of pain and suffering now.. Tom im so sorry hon big hugs to you and all who loved her
I love how your spreading awareness about eds. I didnt even know that was a thing until i started watching your videos this year. I hope your doing fine and stayinf safe in this pandemic
Sex doesn't equal intercourse. There are many ways of having sex that does not include penetration. If you're stimulating each other's genitals in a pleasurable way it sure is sex.
I am so glad to see you. I have missed you!! My daughter has a semi mild case of EDS. I hope it stays that way!! You look well! I hope your emotional state gets better. It is hard to be so confined! Tom is so supportive! And you are to him also. My daughters husband is too! He is awesome! I hope to see you more often!! Keep your chin up! Love you!!
How do you manage to stay so beautiful with a chronic illnesses? There’s days I can bearly brush my hair and forget make-up. Thank you for the vlogs they help keep my spirits up
Tom helps me ALOT with things like, showering, drying/brushing & straightening my hair, he also helps me get dressed sometimes & occasionally helps with my makeup too, so I’m so lucky otherwise I would be in so much pain and be struggling so much!! 😅😅😅💜💜
My rheumatologist diagnosed me with hypermobile type Ehlers Danlos syndrome, and advised against seeing a geneticist. He could rule out vascular type Ehlers Danlos syndrome because a previous highly invasive surgery would've killed me if I had vEDS. With the deadly vEDS ruled out, and hEDS being the most likely, it would be both expensive and irrelevant which of the other possible types I might have - treatment would be the same either way: EDS is treated and managed symptomatically. (This is also the reasoning why most medical insurance plans will not pay for genetic testing for EDS.) I recently was chosen to be a part of the HEDGE project to identify the genes responsible for hEDS by sending in my DNA. Through this, I'm going to end up being genetically screened for all of the other types of EDS for free, so now I'm extra thankful that I didn't pay to get tested back then.
Since being diagnosed with eds your videos have taught me so much and made me to feel less alone with this illness. Thank you for all your hard work, really appreciated!
I don't have EDS, but as someone else with a chronic illness (in my case, severe endometriosis), I can relate a lot to your mental health just completely tanking. I haven't been able to see my partner since February now, and with surgery appointments coming up, I likely won't get to until August, and the thought is enough to want to make me scream until my throat's raw. I'm grateful for the internet and being able to still see and hear people, but not being close to another person is so difficult. I hope you stay safe and I'm wishing you all the best.
I really feel for you having that, I don't but a family member does and nothing ever seems to help it's hard seeing her in so much pain and she regularly has to cancel plans with people last minute then feels guilty even though she shouldn't, It's not something that seems to have enough awareness given to it either. X
Amy, congratulations to you and Tom on the new house! I'm so sorry to hear that you're struggling with your mental health. I hope that you are able to take as good care of your body and mind as possible. The isolation is so hard. I've also felt my mental health taking a dip during the pandemic, which I wasn't expecting and really surprised me. I'm an introvert, so I figured that being at home all of the time would be like a paradise, but the isolation really does take a toll. I don't have a debilitating chronic physical illness to deal with like you do, so I can't imagine how hard this is for you. I know that appearances are not an accurate indicator of wellness, but you looked really nice in this video. You were so vulnerable and brave when you talked about how you struggled with body image issues due to being malnourished. It seems like you've gained some weight, and I'm so happy for you!
I’m glad that question was asked and you answered. I have Lupus SLE, RA snd Sjogrens. Ive had a lot of people in my life who think im faking my illness, people saying oh she just doesn’t want to work etc. I have distanced myself from these people. It upsets me, but I try not to let the comments bother me. I just wish they could spend a day in my shoes.
I have an autoimmune disease and I get that all the time. You don't look sick. Are you sure it's as bad as you make it out to be? Do you just don't want to work? Are you just looking for sympathy? From friends, family, strangers at the chemist when I'm discussing my medication with the pharmacist. The invisible ailments are some of the worst to get stuck with because you can feel like absolute shit and people will dismiss you. But you could have cancer and look like shit and people will treat you gently. Not saying what I have is anywhere near cancer but you get it. And dismissive doctors are the worst. You need to be heard to feel better. It may not cure anything but it helps take some of the load off.
Struggling with unknown (yet) health condition that might be some sort of channelopathy, fibromyalgia suffer and being in constant muscle-skeletal pain is hard but spreading awareness is, for me, a way to cope with... who wants to listen you and comprehend your symptoms will be by your side no matter what!! Thank you Amy for what you’re doing, hope your mental health will be better soon 💜😘 sending love to you 💜
This is the first time I've heard of someone else who has EDS and who has had pulmonary embolism and uncontrolled clotting. As an aside, I had the PEs following EDS related surgery. (Edit...I was diagnosed with EDS at 18 too). RIP Amy xxx
Beauty, grace and strength! I’m a new follower from the U.S. and remain in awe of your challenges and daily routines. Thank you for spreading awareness and educating all of us. Live, love and laugh (often)! 💕
Seeing that you uploaded a new video literally gave me the biggest smile on my face. I know you said you were having a rough time overall so I’m glad you felt okay enough to spread more awareness on EDS and make more content for us. We al love you so much and hope you feel good. Gonna fall asleep watching your channel to help bring more support!
@@neen42 yes Wendy. My sentiment exactly. She was a very joyful spirit. Soooo beautiful and full of life and love! I will never understand why these things happen.
She was not suffering her life or anythi g you know? If you speak about her like that, you totally didn't get her. And no offense, but thats disrepectful. It sounds like you think she sounded to be out of her misery and NOT THE CASE AT ALL. Maybe rethink and rephrase your words!!! They're offensive
@@chinchillamdgamer no, that's not what I meant. I meant she went through A LOT OF SHITTY THINGS, yet she still was lively, had friends, and went out. She was vibrant and alive, regardless of how much pain she was in, or how little nutrition she was getting. She still loved life regardless, fought incredibly hard, AND WANTED TO LIVE.
Congratulations on the new house. Tom is definitely an angel in your life. Are blood clots a risk of EDS or your medication? I survived two rounds of pulmonary embolism lung clots.
Hi Amy, I just wanted to say thank you. I’ve been struggling with really bad symptoms for a year now and had loads of tests but doctors didn’t know what it was. You’re video was recommended to me and I started watching you a lot then realised that a lot of my symptoms matched yours. I am now in the process of being diagnosed with EDS and POTS. If I hadn’t found your video I don’t know how long it would’ve taken for me to get this diagnosis. Thank you so much, stay strong ❤️
Thank you for your ongoing open, honest and informative insight into the hard times you are facing. Know that we appreciate you and the work you do to keep us informed
i'm an introvert so i didn't think that my mental health would get worse than it was before covid19. but surprise surprise, being isolated for months has completely destroyed my mental health. dealing with chronic illness is much easier when you aren't stuck at home 24/7 lol i hope that covid19 settles as quickly as possible so that yours (and my) mental health gets better. wishing you all the best amy! also, happy EDS month!! 💜 edit: it's been a long time since i checked on this channel, but i do think about amy from time to time. rest in peace amy.
I know this is an old post. I hope you are doing okay now. I can take a while to recover from a significantly bad mental health episode, especially one that lasts for months. My mental health also deteriorated badly in the pandemic and I don't have any physical issues. I had been mentally ill before the pandemic and had recently become symptom-free when it hit. I am no where close to symptom-free now.
The last few years have been tough, things get better, then they get worse, lots of ups and downs again and again. It's exhausting. I hope you reach a point where you're symptom-free, keep at it. Remain hopeful, it's important to be hopeful so that you don't give up. Good luck! @@FronteirWolf
Thanks for so much info. Your calm and candid way of presenting this info is amazing. I really look forward to hearing your voice and seeing your smile. Stay safe.
Thank you so much for these videos, Amy! I just wanted to say your efforts for raising awareness is not in vain. I'm a graduate student in biology who semi-coincidentally was assigned to a project about understanding the intestinal stem cell niche. I have been learning a lot about connective tissues and the abundance and subtypes of collagen and I feel like your videos and other chronic disease activists are really helping me process what I have been learning academically. I do really think your condition and other types of connective tissue disorders will receive more attention in the coming years as more suitable techniques develop. I sincerely hope that at some point in my career I will be able to run my own project about EDS and I think the path I'm on could just lead to it. Also, I wanted to ask what you meant by having traits of vascular type EDS. Unlike the hypermobility type, vascular type is associated with a gene, collagen 3a1. Were you tested for a mutation for it and the results came back negative, but clinically you display the traits? If so, and if you were told/can remember, was the geneticist using a DNA or RNA sequencing test, or something else? Lastly, for those of you who are interested in the technical side of genetic disorders, you can visit OMIM, which is a database for human genes and genetic disorders. It works almost like google and lists all entries for your query. Each includes a summary, as well as scientific paper references for a better look. For EDS, click www.omim.org/entry/130050?search=ehlers%20danlos&highlight=danlo%20ehler
I've never seen someone speek about their illnes and issues with such an ease and calm. Often i see people who's sick being very God- religion oriented, so for me it's very surprising how mature you're. I'm 24 i guess we have the same age.
So happy to see you. You are so beautiful. I love to hear you talk. I love your accent. Thank you for being so transparent. You have helped and encouraged thousands of people. You are a blessing.
I completely relate to people not understanding your medical condition. I was diagnosed with epilepsy in 2016, and a few of my friends just didn’t get it. The smallest thing’s can set my epilepsy off, so for example I had a UTI and ended up having to be hospitalised over night because I had 6 seizures, all caused by the UTI. I found out through mutual friends that this girl that was supposedly my best friend said I was over reacting and lying about everything. It’s safe to say I cut her out of my life as soon as I found that out. (Edit: I am aware epilepsy is nothing compared to Amy’s conditions, but not having true supportive friends is the worst)
Any ailment can be carried different. Someone can be comfortable and happy with cancer (not downplaying it at all but you get it) but someone with the flu can just shut down and be utterly miserable. Everyone carries themselves differently. I have an autoimmune disease and my worst thing to deal with is the constant and heavy fatigue and joint pain. Because it's invisible people don't get. I'll cry as I'm laying in bed because I'm in such agony. And until you have it, you can sympathize but never TRUELY get "it" I found out a friend was saying I was an attention whore and a drug addict because we were at a party and had to excuse myself to take pain medication and cry a little in the bathroom because I was in the middle of a painful flare up but didn't want to miss the party as it was a 21st. I told her to shove it and announced if anyone had an issue with my pain management or disease (though God knows why it would bother anyone else unless it's worry) to go to hell and rack off. I'm so sorry you had to deal with that horrible human and I'm glad you had the strength to tell her off
The hormones released during pregnancy increase joint mobility, which can cause EDS symptoms to worsen. Caesarean section, as with most surgeries, tend to take longer for EDS people to recover from. The physical inactivity while recovering can cause deconditioning, which can also worsen EDS symptoms. I had a highly invasive abdominal surgery which severed most of my abdominal muscles, and it took years to recover from it, due to my hEDS. Thankfully I didn't experience any hernias, which is also much more common following abdominal surgeries with EDS people.
I was glad to see this video because I had been wondering how you were doing. I suffer from depression and anxiety so I know how hard being isolated can be. I have been praying hard for you and will continue to do so. Hang in there and know there are lots of us out here loving you and supporting you
I'm so sorry to hear that we lost another chronic warrior 😢 RIP Amy Lee Fisher. You will be missed for sure. I really looked up to her and she always made me laugh whenever I was down. She was a beautiful soul. We love you dear Amy 😇🕊🙏🕊✝️ from America 🇺🇸 ❤
it's very sad to watch this RIP 🙏 no more pain no more pills no more tubes I know you are very happy now God put you here to teach and you have done just that .a love of life and love you now will live forever.
I’m so happy to see you! I’ve been wondering how you are for a while and that’s just out of caring. I don’t wish to make you feel obligated to do something at all, I’m just happy to see you again. I am so happy for you and Tom to be in your new house. I can imagine though that it sometimes must be lonely eventhough Tom is a blessing. I feel you on the mental health part. I haven’t been able to go out for months either and it’s like the walls are coming at you. I thank you for sharing that, because it makes me feel less alone. I hope you also feel less alone when reading these comments and knowing that people care much about you! I send all My love to you both ❤️
Thank you for uploading this! Even though you look tired, and down. I hope you get to feeling like yourself again, I also struggle with mental illness. You got this honey 💞
When you started talking about genetics and how if you're the first person in your family diagnosed, you start thinking back, I related to that so much. My sister and I have NCS. She has a pretty severe case and mine is very mild. Over the years, we realized our Gram likely had it. Well, Gram ended up in the hospital for pneumonia (she had alzheimers and congestive heart failure for 5-10 years). Her BP started acting up after the docs started some med on her. We flew in and went to the hospital because things were not looking good. My sister explained our family history and the doctor changed the med based on what my sister told him and sure enough, her BP became regular.
Good to see ur back mental health has not been good for a lot of us all my hospital work app got cancelled because of covid x ur looking good girl stay strong and stay safe xx
Watching you brings a smile to my face and a warm glow to my heart (unless that was a heart attack 😂). It saddens me to hear that you're not doing well, or having a rough go of it. I wish there was something that could be sent or said to get you feeling better. This community of people you've fostered, built, created love you and wish you only the best. We love all your posts, and look forward to hearing from you, but your mental, emotional, and physical health is more important than our desire for content. You've done so much for so long already, no one can begrudge you this little break. I've been home bound the last 3 months. I've not left the house. I have a compromised immune system, and I live in the U.S. so I just go out onto my porch or backyard when I feel the walls start to close in. I've talked too much, just wanted to let you know that you have people who still care, and will be here when you're ready to come back.
You are wonderful Amy, i really want you to be happy and i wish you and Tom the best. Sending you all my love!! thank you for uploading such valuable content :)
I absolutely love your videos Amy. They're informative and helpful. I too suffer from gastroparesis, p.o.t.s. ,inflammatory bowel disease, and barrett's esophagus. These make me feel like I'm not the only one going through these things ! Keep posting dear. And you are the sweetest girl ever!
When I first started watching you I thought I had EDS, I still don’t know! It’s frustrating. I now live off my feeding tube and am unable to swallow food. It’s hard but I know it could be so much worse. I’m hope you continue to do well!!
Amy greeting from Wales. Just to share part of my story....I am also TPN dependent with Ed's type 3 and in 2018 I gave birth to my son Jude and was the first TPN dependent patient to give birth in Wales. Never say never. I also thought I'd never have children and then had the ripe old age of 35 it happened. Could be the same for you and Tom. Best wishes to you both Xxxx
Glad to see you uploading! Was getting pretty worried. I missed watching your videos! Don’t worry, I think we’re all struggling right now. I know personally I’ve been struggling too and just know you’re not alone! Love you and Tom so much and hope to see new videos soon!! 💙💖
everyone is going to miss amy her personality and having a heart of gold she will always be loved and missed by everyone including her best friends her bf tom and her mum dad stepdad eric and ellie and of course lilly
my dad has EDS and POTS and ever since i was younger i have always been worried when he passes out and things but your videos have made me understand everything so much better thank you x
It's painful to hear her say, "Were going to be here for a long time" and now less than a year later shes gone. RIP Amy, you were such a lovely person. My condolences to your family and everyone close to you.
Shut uppppp
Sorry i dont wanna hear she is dead
@@Eleonora333 it literally doesnt take much to be nice
How did she die?
I miss her. 😢🤧
@@melissanichols5392 complications from eds. She was hospitalised for a long period with heart failure, pulmonary embolism, mast cell activation etc which also lead to general organ failure
I hope those horrible people who didn’t believe her feel terrible now. She died. Still think she’s “making it up?” Absolute shame on those people in the highest degree. RIP Amy. It broke my heart to hear we lost you.
agreed hun hope they are feeling guilt now over it
@@sandrajeffery7005 No one feels guilty. Sadly this is the second person who had to pass away before people believed they were ill. Remember "Chronically Jaqui".
@@olivianovak4788 ye but still gone too soon same as chronically jacqui been taken too soon EDS Is such a cruel illness r.i.p jacqui and amy both gone too soon
Lisa Mccullough - ur quite right that people can be horrible... it has to be said that poor Amy in her vlogs always had a smile on her face (no excuse 4 calling her a faker tho) and even in her very last video she appeared serene - she was & still is an example to us all, sick & healthy alike
@@olivianovak4788 Not trying to say that they were faking it or anything, but Chronically Jaquie didn't die because of illness, she died due to complications from a very invasive surgery that multiple doctors initially refused to perform
It's so sad to think that a less than a year ago Tom and Amy were having all these dreams, buying a house, etc. I hope Tom will be OK.
The main thing is hey did start to fulfill those dreams when they could and that she lived life to the fullest she possibly could even with how poorly she was. It's such sad news but I did watch a video once she did about the TPN saying how it would only help temporary and at some point she would probably start to go into heart failure been on it long term. But it helped her in the time she had it and she managed to gain weight and become more healthy in that time which probably enabled her to survive a little longer.
@@MsDragonfire1992 Indeed. If doctors suggest TPN, they are not suggesting it for no reason.
They moved into their home I would say a year ago. That was her dream. To be independent on their own. I do believe they did that. Just sad they didn't have many many more years together. But in all honesty we don't know exactly what she had went thru this last year and half. Emotionally and physically. She tried so damn hard that we know.. I honestly didn't know that having to use a tpn wasn't good.. loved this girl. So many prayers and thoughts to her family..
I'm still in shock that Amy is gone. My deepest sympathy Tom & Family & her besties. Amy was an amazing, brave, strong, beautiful soul. She's helped so many in life. She's earned her wings & will always watch over you. My deepest condolences, Amy will be deeply missed 🕊🙏💜
Still feels like she's around. I hope that she's resting well.
true amy deffo gained her angel wings fly high angel you was so brave and had a beautiul soul and fought so hard rest easy amy sleep tight ams you earned your wings no more pain , suffering or tubes or medications r.i.p ams thoughts with sophie, chloe all your other friends tom and your family xx
What happened to her, when did she die?
Omg that sux I really loved her.
@@melissanichols5392 Hi Melissa Amy passed April 1st this year from complications from her EDS & potential heart failure. She was in ICU. It was a terrible shock to everyone & I can say for me, I haven't been right since. Amy & I shared some of the same gastric diseases, POTS & Motility Disorder & she was a great inspiration to me. She's greatly missed. Tom posted something on her YT channel sometime ago. Her sister also posted something recently.
I literally just found out that she passed and i’m in shock. I’m so sorry to her family and tom for their loss. I’ve been watching Amy since 2017 and I just yesterday was curious why I haven’t seen her vids. Rest in peace gorgeous, I know you’re no longer suffering and that’s all anyone could ever want for such a sweet soul. 💖
We are all dying. You, my friend, are a legend and will live on forever!
Mel Thompson, a beauty community creator just passed away and I heard she suffered from EDS. I wish the awareness of the deadly and painful disease was made more aware by more people. Thank you for being brave and sharing your courage and journey with us. Sending everyone oodles of love.
Amy you were an inspiration for those living with disabilities and chronic illnesses! You will be missed! Rest in peace
I am so so saddened for your enormous loss. Amy was simply AMAZING!!! She touched my life so much by sharing her own struggles she made mine seem so small. My heart & prayers go out to Amy's entire family, friends & to the love of her life...her sweet boy, "Tom."
Even though I don’t have EDS, I really appreciate that you use your platform and voice to speak out and let people know that you can live with a chronic condition. You remind people (me included) that life still goes on and that you can be happy or at least carry on through the bad times and bad days. ❤️
Thank you so much for everything you have done, the support you have so many people to make us feel not alone. I have EDS, POTS and i'm now developing gastro issues too. I wouldnt have reached out to my doctor saying 'could this be EDS' had I not stumbled upon your channel. Now I'm slowly getting support to live a fuller life. You will be missed by us all so very much R.I.P angel xx
I'm watching this right after finding out she passed...i want to understand the disease that took her too soon... Rip girl !
I still can't believe she's gone just few hours I found out about her death and I was upset when to work and I kept thinking about amy she wanted to live to be hear in this life she fought everyday despite all her chronic pain she always push forward..rest in peace beautiful..
I am so sorry to you Tom for the loss of Amy my thoughts and prayers are being sent your way of all the people that were close to Amy. I have been watching her for about 3 years now. Such a sad sad thing to lose her.
Fly high you beautiful girl. No more pain or suffering Amy. We will all miss you but I know we will see you again 🙏🦋
I miss her so much! I was so hopeful to meet her one day. Sending all my love to her fam. Please know she is most definitely not forgotten. She’s still giving me EDS strength, on the daily. We love you, Aims!
Girl, this pandemic and just sitting home feeling all this pain and not having my daily interactions to distract me from it is taking its toll on me too. I just keep telling myself it’ll be over soon, try and make the best of it. Trying to do small manageable projects at home (been organizing drawers, sorting old keepsakes, etc.) just time keep myself busy and productive, seems to be helping. So happy to see your face though Amy. You make me feel like someone else is going through this too, you’re not alone. 🤍🖤🤍🖤🤍
hey try watching sophie's life thats amys best friend still fighting very day ith her EDS
@@sandrajeffery7005 What’s her channel...I searched Sophie’s Life and I don’t think what came up was her....?
I'm sorry you lost her, I just found out
So happy to see you! Was so worried. So glad about the house being done. It’s beautiful!
👍🏻
I don't have EDS, but love that you are spreading awareness as well as sharing your interabled relationship. I have been recently diagnosed with chronic vestibular migraines. It is nice to know that we arent alone.
😥😥😥🙏🏻🙏🏻🙏🏻🙏🏻 Tom I'm so sorry that you, the family and the world has lost Amy. She has helped me so much.
My God i just found out its heart brakeing! She was so young!
What noooo when did she pass away
😞💔
@@poppi-maetaylor4407 3 days ago... She did a last video. Its her last farewell.
@@luisforeal8676 she passed on april 1st. 3 days ago, the video was posted.
Rest in Paradise beautiful, warrior Queen. Fly high. I am heartbroken 💔. My prayers are with her parents and her honey. 🙏🏽
She went through so much! I miss her. She's not suffering now.. I felt she had a good attitude through out the journey she shared with us. R.I.P. prayers to her loved ones 🙏❤
honesty breaks my heart that she’s passed, now do you people that said she’s faking it relapse it wasn’t fake. this was very real, she touched so many people including me. she got me through my 2 year long hospital admission without knowing it. i would check her social media’s daily for the past few months and i come onto youtube last week and saw she had passed and my heart genuinely hurts.
people that do thar aret worth worryig about their scum and dont have respect for amy i will stick up for in her memory now and honestly think that her legacy shall continue forever miss her videos r.i.p amy u was always loved by tom your family and followers no pain anymore rest easy much love to amys family and rest of her followers and tom and ellie, rest easy amy much love to u all xx
Who says she's faking it? I heard a few things one was that she caused a lot of health issues with her (alleged) eating disorder and that combined with complications from EDS (like infection from her central line) was what killed her. I have no idea if any of that is true but that's what I heard.
As another young woman with a severe life limiting chronic illness, I'd rather believe her.
RIP Amy. I wish you could've been my friend IRL.
Living with chronic conditions/pain is so hard and sometimes really gets me down but seeing people like you who have it worse and are dealing with it like a pro and living you’re best life is so amazing! Need to be more positive 🖤
All I literally just want to tell Amy is that I’m glad that she is a person that fights. In her shoes I would have given up, I couldn’t keep up with all her routines like that. She has a beautiful will to live and that’s why I love to watch her videos. Do you people agree?
She's passed away unfortunately.
❤️ I enjoy/find a sense of comfort in watching back these videos as it feels like Amy is still here ❤️
She asked people to re-watch her videos to help financially the 28th of March. I wonder if we did that if it would help Tom and family.
"Is EDS fatal?" Hell, *life* is fatal. Stay safe and thanks for posting the video.
Couldn’t say it better!
eco2geek Yes it can be, there are many forms of EDS Syndrome, I have the worst one, Vascular EDS with extreme hyper mobility. If I wrote on here every fatal thing that I have happening in my life and the things that are going to cut my life short we would be here forever. But you just try to deal with it, I will tell you that the pain I have from morning til night is excruciating and debilitating. If you please for the sake of those that suffer this kind of thing...don’t be so flip about it. You never know what is around the corner for all of us. Have a great life, I truly mean that.
@@BlueBirdsSong I have my own issues -- that's why Amy Lee Fisher's channel got in my recommends -- but they're nowhere near as bad as hers or yours. I do have a tendency to be facetious, it is true. For example, I've told people that if anyone could "win" TH-cam for having the worst physical problems, it would be Amy. But the things she has to do on a daily basis just to stay alive are not funny at all. Pain is not funny. I guess being "flip" is just a way to deal with reality. Sometimes it offends people, but it's not meant to. Good luck and take care of yourself.
I was stabbed and left for dead, but I am still here. Everyday is a blessing. You never know what can happen. I'm strong and positive, you keep going girl! You are my hero ❤️
Hi there! My mom has EDS and along with EDS she has another genetic disorder thats called disominomia (sorry if i misspelled that.) Wich can be linked to EDS . I have some symptoms of both things but I don't know how to get tested for either thing. I'm 1 of 4 kids. So there's a 50/50 chance I could get one or both.
So charismatic and inspiring. I've been watching her all day. You are missed by so many. ❤
I have EDS and (compared to healthy people) an incredibly high pain tolerance, I'm used to ribs and vertebrae pretty much permanently being out but I dislocated my hip for the first time a few weeks ago and I literally couldn't roll over in bed the next morning to reach pain killers. I cannot imagine life dislocating my hip twice within two months, much less up to 50 times a day plus all your other problems. I hope you realise how fucking strong you are being able to function with and live through that
I was born at 6 months also but don't have any health problems. Realizing now how lucky I am to be healthy. Amy was a strong girl who fought a lot daily to just stay alive. May she rest in peace.
I’m so so sorry. Amy thank you for your contribution to your fans
So sad that she is gone. Rest in Peace, Amy!
Still can’t believe you are gone Amy. You were such a positive leader & informant about EDS and invisible illnesses. You helped me and just know you helped SO many other people too. Miss you, you fabulous girl! 🖤🤍🖤🤍
Tom, I’m still sending you hugs, prayers and well wishes.
I have Classical EDS , I’ve had 2 children , I had my son before I had my diagnosis (took til I was 33 to get one) , I needed an emergency c-section but sustained nasty pelvic injuries , my son had clicky hips which can be a sign that the mother has EDS or indeed that the child does , he was fine . 4 years later I chose to have another baby but was monitored very carefully with a planned c-section at the end , things went well . My daughter does have EDS but copes really well , it doesn’t seem to affect her digestive tract like me ( I’m on TPN due to Gastroparesis) but she does suffer with reflux which is how I used to be . She has a fighting spirit that I’m in awe of , despite doctors and specialists advising her to give up dance she never did even after needing surgery on her feet . She did 4 years at uni and is now a dance teacher , I am so proud of her x
Iv been told that having kids will be to hard, and the risk is to high..... this post just gave me hope thank you so so much! xxx
I suspect I have EDS, as I have several chronic illnesses/digestive autoimmune diseases an hypermobile joints. My son is even more hyper mobile than me and when he turned 3 I became concerned. He’s 5 now and more recently when he’s stood up, his hip has popped out of place for a second. He’s extremely hypermobile(we’ve already had to ER incidents with joints), has had severe digestive issues and reflux since birth along with other complaints. I’m 99% sure he has it. First few drs were like “oh yeah his joints are hypermobile,” but didn’t say anything past that. How did you receive a diagnosis for your children?
Have you ever tried ivig for gastroparesis?
Such a mature level headed young girl! God bless her! So sorry for your loss! RIP Lovely Amy...🌈🌻💔
May you find the peace you deserve and know that many people whom you didn't know personally loved and thought alot about you. You will be missed. So many prayers to Tom and your family.
I can't believe she is no longer with us. To look at her, so beautiful to realize that she is gone. Tom, I want you to make a tribute to Amy; you were such a lovely couple. The world needs to grieve with you. I love you🙏✝️💕
I don’t have EDS but I feel the same way about having children because of my mental health issues that are hereditary. I couldn’t ever put another human through this. To me, no one deserves this shit. So my mental health issues die with me whenever that day may come. And I’m so glad my boyfriend also doesn’t want children. It makes living so much easier.
I’m heartbroken - sympathy to Tom & all of Amy’s loving family & friends. A beautiful soul, lost to the world.....rest easy beautiful princess! 💕💕💕💕💕💕
Heartbreaking to learn of Amys passing fly high sweetheart you are free of pain and suffering now.. Tom im so sorry hon big hugs to you and all who loved her
I love how your spreading awareness about eds. I didnt even know that was a thing until i started watching your videos this year. I hope your doing fine and stayinf safe in this pandemic
There are many ways to have sex besides intercourse. Your way of having sex is valid.
🙌🏻🙌🏻🙌🏻 I totally agree!! Sex is the different for every couple, and whatever is mutually enjoyable is 100% valid.
i feel like it should be there are different ways to be intimate without sex.
sex toys''''''''''' ;|)
Agree!
Sex doesn't equal intercourse. There are many ways of having sex that does not include penetration. If you're stimulating each other's genitals in a pleasurable way it sure is sex.
I am so glad to see you. I have missed you!! My daughter has a semi mild case of EDS. I hope it stays that way!! You look well! I hope your emotional state gets better. It is hard to be so confined! Tom is so supportive! And you are to him also. My daughters husband is too! He is awesome! I hope to see you more often!! Keep your chin up! Love you!!
I'm so sad💔Amy, you will be missed 🙏🥺
😭😭😭. Miss her like a good friend.
How do you manage to stay so beautiful with a chronic illnesses? There’s days I can bearly brush my hair and forget make-up. Thank you for the vlogs they help keep my spirits up
Tom helps me ALOT with things like, showering, drying/brushing & straightening my hair, he also helps me get dressed sometimes & occasionally helps with my makeup too, so I’m so lucky otherwise I would be in so much pain and be struggling so much!! 😅😅😅💜💜
@@amyleefisher52 I wish I could find someone like tom,bless u both
Amy Lee Fisher you have the most gorgeous skin, hair and teeth, and your makeup is always lovely.
Was glad to see you today. Here's wishing it gets easier with age for you. Much appreciate your efforts and the time you put in for awareness.
RIP Amy!! Blessings and peace, Tom!
My rheumatologist diagnosed me with hypermobile type Ehlers Danlos syndrome, and advised against seeing a geneticist. He could rule out vascular type Ehlers Danlos syndrome because a previous highly invasive surgery would've killed me if I had vEDS. With the deadly vEDS ruled out, and hEDS being the most likely, it would be both expensive and irrelevant which of the other possible types I might have - treatment would be the same either way: EDS is treated and managed symptomatically. (This is also the reasoning why most medical insurance plans will not pay for genetic testing for EDS.)
I recently was chosen to be a part of the HEDGE project to identify the genes responsible for hEDS by sending in my DNA. Through this, I'm going to end up being genetically screened for all of the other types of EDS for free, so now I'm extra thankful that I didn't pay to get tested back then.
Who else’s face lit up when u got a notification for Amy’s video 😍🥳
me
I was so excited!
Mine !!!!!
Me
Me avid watcher
Since being diagnosed with eds your videos have taught me so much and made me to feel less alone with this illness. Thank you for all your hard work, really appreciated!
I don't have EDS, but as someone else with a chronic illness (in my case, severe endometriosis), I can relate a lot to your mental health just completely tanking. I haven't been able to see my partner since February now, and with surgery appointments coming up, I likely won't get to until August, and the thought is enough to want to make me scream until my throat's raw. I'm grateful for the internet and being able to still see and hear people, but not being close to another person is so difficult. I hope you stay safe and I'm wishing you all the best.
I really feel for you having that, I don't but a family member does and nothing ever seems to help it's hard seeing her in so much pain and she regularly has to cancel plans with people last minute then feels guilty even though she shouldn't, It's not something that seems to have enough awareness given to it either. X
Thank you for sharing about your sex life! It normalizes that not all couples have traditional sex and that is okay.
Amy, congratulations to you and Tom on the new house! I'm so sorry to hear that you're struggling with your mental health. I hope that you are able to take as good care of your body and mind as possible. The isolation is so hard. I've also felt my mental health taking a dip during the pandemic, which I wasn't expecting and really surprised me. I'm an introvert, so I figured that being at home all of the time would be like a paradise, but the isolation really does take a toll. I don't have a debilitating chronic physical illness to deal with like you do, so I can't imagine how hard this is for you. I know that appearances are not an accurate indicator of wellness, but you looked really nice in this video. You were so vulnerable and brave when you talked about how you struggled with body image issues due to being malnourished. It seems like you've gained some weight, and I'm so happy for you!
Crazy how I miss her so much. Wish we could have had her a lil bit longer 🥺🥺
I’m glad that question was asked and you answered. I have Lupus SLE, RA snd Sjogrens. Ive had a lot of people in my life who think im faking my illness, people saying oh she just doesn’t want to work etc. I have distanced myself from these people. It upsets me, but I try not to let the comments bother me. I just wish they could spend a day in my shoes.
I have an autoimmune disease and I get that all the time. You don't look sick. Are you sure it's as bad as you make it out to be? Do you just don't want to work? Are you just looking for sympathy?
From friends, family, strangers at the chemist when I'm discussing my medication with the pharmacist.
The invisible ailments are some of the worst to get stuck with because you can feel like absolute shit and people will dismiss you. But you could have cancer and look like shit and people will treat you gently. Not saying what I have is anywhere near cancer but you get it.
And dismissive doctors are the worst. You need to be heard to feel better. It may not cure anything but it helps take some of the load off.
@@thatgrumpychick4928 When I get that challenge my reply is that 'You don't look stupid either so it just goes to show....'
Struggling with unknown (yet) health condition that might be some sort of channelopathy, fibromyalgia suffer and being in constant muscle-skeletal pain is hard but spreading awareness is, for me, a way to cope with... who wants to listen you and comprehend your symptoms will be by your side no matter what!! Thank you Amy for what you’re doing, hope your mental health will be better soon 💜😘 sending love to you 💜
This is the first time I've heard of someone else who has EDS and who has had pulmonary embolism and uncontrolled clotting. As an aside, I had the PEs following EDS related surgery. (Edit...I was diagnosed with EDS at 18 too). RIP Amy xxx
Rest In Peace, beautiful soul ❤️
Beauty, grace and strength! I’m a new follower from the U.S. and remain in awe of your challenges and daily routines. Thank you for spreading awareness and educating all of us. Live, love and laugh (often)! 💕
Seeing that you uploaded a new video literally gave me the biggest smile on my face. I know you said you were having a rough time overall so I’m glad you felt okay enough to spread more awareness on EDS and make more content for us. We al love you so much and hope you feel good. Gonna fall asleep watching your channel to help bring more support!
Missed you Amy
TH-cam just put this in my recommended. Such a heartbreaking thing still, and that title just 😥
I miss you Amy .... I was really hoping you could get through this.... you gave it your all. Your a perfect Angel 👼 now 🤗
Rest easy sweet girl ❤️❤️ No more pain and suffering....
So much pain and suffering in 24 years, but so much love and life also
@@neen42 yes Wendy. My sentiment exactly. She was a very joyful spirit. Soooo beautiful and full of life and love! I will never understand why these things happen.
She was not suffering her life or anythi g you know? If you speak about her like that, you totally didn't get her. And no offense, but thats disrepectful. It sounds like you think she sounded to be out of her misery and NOT THE CASE AT ALL. Maybe rethink and rephrase your words!!! They're offensive
@@chinchillamdgamer no, that's not what I meant. I meant she went through A LOT OF SHITTY THINGS, yet she still was lively, had friends, and went out. She was vibrant and alive, regardless of how much pain she was in, or how little nutrition she was getting. She still loved life regardless, fought incredibly hard, AND WANTED TO LIVE.
Rest In Peace, Amy ❤️
Congratulations on the new house. Tom is definitely an angel in your life. Are blood clots a risk of EDS or your medication? I survived two rounds of pulmonary embolism lung clots.
Hi Amy, I just wanted to say thank you. I’ve been struggling with really bad symptoms for a year now and had loads of tests but doctors didn’t know what it was. You’re video was recommended to me and I started watching you a lot then realised that a lot of my symptoms matched yours. I am now in the process of being diagnosed with EDS and POTS. If I hadn’t found your video I don’t know how long it would’ve taken for me to get this diagnosis. Thank you so much, stay strong ❤️
What is eds?
Thank you for your ongoing open, honest and informative insight into the hard times you are facing. Know that we appreciate you and the work you do to keep us informed
I had no idea she passed away..I'm so sorry Amy and Tom.
i'm an introvert so i didn't think that my mental health would get worse than it was before covid19. but surprise surprise, being isolated for months has completely destroyed my mental health. dealing with chronic illness is much easier when you aren't stuck at home 24/7 lol
i hope that covid19 settles as quickly as possible so that yours (and my) mental health gets better. wishing you all the best amy! also, happy EDS month!! 💜
edit: it's been a long time since i checked on this channel, but i do think about amy from time to time. rest in peace amy.
I know this is an old post. I hope you are doing okay now. I can take a while to recover from a significantly bad mental health episode, especially one that lasts for months.
My mental health also deteriorated badly in the pandemic and I don't have any physical issues. I had been mentally ill before the pandemic and had recently become symptom-free when it hit. I am no where close to symptom-free now.
The last few years have been tough, things get better, then they get worse, lots of ups and downs again and again. It's exhausting.
I hope you reach a point where you're symptom-free, keep at it. Remain hopeful, it's important to be hopeful so that you don't give up. Good luck! @@FronteirWolf
Thanks for so much info. Your calm and candid way of presenting this info is amazing. I really look forward to hearing your voice and seeing your smile. Stay safe.
Thank you so much for these videos, Amy! I just wanted to say your efforts for raising awareness is not in vain. I'm a graduate student in biology who semi-coincidentally was assigned to a project about understanding the intestinal stem cell niche. I have been learning a lot about connective tissues and the abundance and subtypes of collagen and I feel like your videos and other chronic disease activists are really helping me process what I have been learning academically. I do really think your condition and other types of connective tissue disorders will receive more attention in the coming years as more suitable techniques develop. I sincerely hope that at some point in my career I will be able to run my own project about EDS and I think the path I'm on could just lead to it.
Also, I wanted to ask what you meant by having traits of vascular type EDS. Unlike the hypermobility type, vascular type is associated with a gene, collagen 3a1. Were you tested for a mutation for it and the results came back negative, but clinically you display the traits? If so, and if you were told/can remember, was the geneticist using a DNA or RNA sequencing test, or something else?
Lastly, for those of you who are interested in the technical side of genetic disorders, you can visit OMIM, which is a database for human genes and genetic disorders. It works almost like google and lists all entries for your query. Each includes a summary, as well as scientific paper references for a better look. For EDS, click www.omim.org/entry/130050?search=ehlers%20danlos&highlight=danlo%20ehler
I've never seen someone speek about their illnes and issues with such an ease and calm. Often i see people who's sick being very God- religion oriented, so for me it's very surprising how mature you're. I'm 24 i guess we have the same age.
So happy to see you. You are so beautiful. I love to hear you talk. I love your accent. Thank you for being so transparent. You have helped and encouraged thousands of people. You are a blessing.
I completely relate to people not understanding your medical condition. I was diagnosed with epilepsy in 2016, and a few of my friends just didn’t get it. The smallest thing’s can set my epilepsy off, so for example I had a UTI and ended up having to be hospitalised over night because I had 6 seizures, all caused by the UTI. I found out through mutual friends that this girl that was supposedly my best friend said I was over reacting and lying about everything. It’s safe to say I cut her out of my life as soon as I found that out. (Edit: I am aware epilepsy is nothing compared to Amy’s conditions, but not having true supportive friends is the worst)
Any ailment can be carried different.
Someone can be comfortable and happy with cancer (not downplaying it at all but you get it) but someone with the flu can just shut down and be utterly miserable.
Everyone carries themselves differently.
I have an autoimmune disease and my worst thing to deal with is the constant and heavy fatigue and joint pain. Because it's invisible people don't get. I'll cry as I'm laying in bed because I'm in such agony. And until you have it, you can sympathize but never TRUELY get "it"
I found out a friend was saying I was an attention whore and a drug addict because we were at a party and had to excuse myself to take pain medication and cry a little in the bathroom because I was in the middle of a painful flare up but didn't want to miss the party as it was a 21st. I told her to shove it and announced if anyone had an issue with my pain management or disease (though God knows why it would bother anyone else unless it's worry) to go to hell and rack off.
I'm so sorry you had to deal with that horrible human and I'm glad you had the strength to tell her off
The hormones released during pregnancy increase joint mobility, which can cause EDS symptoms to worsen.
Caesarean section, as with most surgeries, tend to take longer for EDS people to recover from. The physical inactivity while recovering can cause deconditioning, which can also worsen EDS symptoms. I had a highly invasive abdominal surgery which severed most of my abdominal muscles, and it took years to recover from it, due to my hEDS. Thankfully I didn't experience any hernias, which is also much more common following abdominal surgeries with EDS people.
I was glad to see this video because I had been wondering how you were doing. I suffer from depression and anxiety so I know how hard being isolated can be. I have been praying hard for you and will continue to do so. Hang in there and know there are lots of us out here loving you and supporting you
I'm so sorry to hear that we lost another chronic warrior 😢 RIP Amy Lee Fisher. You will be missed for sure. I really looked up to her and she always made me laugh whenever I was down. She was a beautiful soul. We love you dear Amy 😇🕊🙏🕊✝️ from America 🇺🇸 ❤
R.I.P beautiful Soul ♡
it's very sad to watch this RIP 🙏 no more pain no more pills no more tubes I know you are very happy now God put you here to teach and you have done just that .a love of life and love you now will live forever.
I Jsut found this channel from the video about her passing. A friend of mine Jsut got diagnosed with Eds so this is very informative for me
I am sending all the love to you amy will be soarley missed but at least she is no longer in pain and at peace 🥰🥰
I’m so happy to see you! I’ve been wondering how you are for a while and that’s just out of caring. I don’t wish to make you feel obligated to do something at all, I’m just happy to see you again.
I am so happy for you and Tom to be in your new house. I can imagine though that it sometimes must be lonely eventhough Tom is a blessing. I feel you on the mental health part. I haven’t been able to go out for months either and it’s like the walls are coming at you. I thank you for sharing that, because it makes me feel less alone.
I hope you also feel less alone when reading these comments and knowing that people care much about you!
I send all My love to you both ❤️
Amy you will be missed! Rest in paradise
Thank you for uploading this! Even though you look tired, and down. I hope you get to feeling like yourself again, I also struggle with mental illness. You got this honey 💞
RIP Amy i just knew you passed away and God knows how you inspire and touch my life to be strong despite of the sickness
When you started talking about genetics and how if you're the first person in your family diagnosed, you start thinking back, I related to that so much. My sister and I have NCS. She has a pretty severe case and mine is very mild. Over the years, we realized our Gram likely had it. Well, Gram ended up in the hospital for pneumonia (she had alzheimers and congestive heart failure for 5-10 years). Her BP started acting up after the docs started some med on her. We flew in and went to the hospital because things were not looking good. My sister explained our family history and the doctor changed the med based on what my sister told him and sure enough, her BP became regular.
Good to see ur back mental health has not been good for a lot of us all my hospital work app got cancelled because of covid x ur looking good girl stay strong and stay safe xx
Watching you brings a smile to my face and a warm glow to my heart (unless that was a heart attack 😂).
It saddens me to hear that you're not doing well, or having a rough go of it. I wish there was something that could be sent or said to get you feeling better.
This community of people you've fostered, built, created love you and wish you only the best. We love all your posts, and look forward to hearing from you, but your mental, emotional, and physical health is more important than our desire for content.
You've done so much for so long already, no one can begrudge you this little break.
I've been home bound the last 3 months. I've not left the house. I have a compromised immune system, and I live in the U.S. so I just go out onto my porch or backyard when I feel the walls start to close in.
I've talked too much, just wanted to let you know that you have people who still care, and will be here when you're ready to come back.
I'm so sad she is gone. I'm trying to understand this disease, what happened? Was it organ failure? Rest in peace sweet Amy.
I believe it was heart failure. She posted alot on Instagram about her heart not doing good .
She mentioned on Instagram that cardiogenic shock nearly killed her, so it could be that :(
You are wonderful Amy, i really want you to be happy and i wish you and Tom the best.
Sending you all my love!! thank you for uploading such valuable content :)
I absolutely love your videos Amy. They're informative and helpful. I too suffer from gastroparesis, p.o.t.s. ,inflammatory bowel disease, and barrett's esophagus. These make me feel like I'm not the only one going through these things ! Keep posting dear. And you are the sweetest girl ever!
When I first started watching you I thought I had EDS, I still don’t know! It’s frustrating. I now live off my feeding tube and am unable to swallow food. It’s hard but I know it could be so much worse. I’m hope you continue to do well!!
RIP ~ YOU ARE LOVED 🙏💔🥰❤️🙏
Amy greeting from Wales. Just to share part of my story....I am also TPN dependent with Ed's type 3 and in 2018 I gave birth to my son Jude and was the first TPN dependent patient to give birth in Wales. Never say never. I also thought I'd never have children and then had the ripe old age of 35 it happened. Could be the same for you and Tom. Best wishes to you both Xxxx
Glad to see you uploading! Was getting pretty worried. I missed watching your videos! Don’t worry, I think we’re all struggling right now. I know personally I’ve been struggling too and just know you’re not alone! Love you and Tom so much and hope to see new videos soon!! 💙💖
Oh Amy.. RIP
everyone is going to miss amy her personality and having a heart of gold she will always be loved and missed by everyone including her best friends her bf tom and her mum dad stepdad eric and ellie and of course lilly
my dad has EDS and POTS and ever since i was younger i have always been worried when he passes out and things but your videos have made me understand everything so much better thank you x
Rest In Peace Amy ❤️
Really happy to see you, Amy! Wishing you all the best.