♡ Is EDS Fatal? EDS Awareness Month Q&A!!! | Amy Lee Fisher♡

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♡ Is EDS Fatal? EDS Awareness Month Q&A!!! ♡
My Website: www.amyleefisher.com
CHECK OUT MY MERCH & Help Support My Channel!
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♡ MORE INFO ABOUT MY HEALTH ♡
• HKPP: medlineplus.gov/ency/article/...
• POTS: www.nhs.uk/conditions/postural...
• M.E/CFS: www.nhs.uk/conditions/Chronic-...
• FIBRO: www.nhs.uk/Conditions/ Fibromyalgia/Pages/Introduction.aspx
• EDS: www.nhs.uk/Conditions/ehlers-d...
• GASTROPARESIS: www.nhs.uk/conditions/gastropa...
• MCAD: www.ukmasto.org/ukmasto-medica...
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Опубликовано:

30 май 2020

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Комментарии : 701

@karliehatcher 3 года назад

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.

@Eleonora333 2 года назад

Shut uppppp

@Eleonora333 2 года назад

Sorry i dont wanna hear she is dead

@markbones6739 2 года назад

@@Eleonora333 it literally doesnt take much to be nice

@melissanichols5392 2 года назад

How did she die? I miss her. 😢🤧

@sarahmo9708 2 года назад

@@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

@lisamccullough5150 3 года назад

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 3 года назад

agreed hun hope they are feeling guilt now over it

@olivianovak4788 3 года назад

@@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".

@sandrajeffery7005 3 года назад

@@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

@susanmargaretwills6432 3 года назад

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

@LellaSci93 3 года назад

@@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

@samhartford8677 3 года назад

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.

@MsDragonfire1992 3 года назад

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.

@samhartford8677 3 года назад

@@MsDragonfire1992 Indeed. If doctors suggest TPN, they are not suggesting it for no reason.

@tinaharner3272 3 года назад

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..

@katelynann1151 3 года назад

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. 💖

@deanaf 3 года назад

We are all dying. You, my friend, are a legend and will live on forever!

@michetrue-aspoonielife4me389 3 года назад

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 🕊🙏💜

@EarGal 3 года назад

Still feels like she's around. I hope that she's resting well.

@sandrajeffery7005 3 года назад

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 2 года назад

What happened to her, when did she die? Omg that sux I really loved her.

@michetrue-aspoonielife4me389 2 года назад

@@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.

@smudgesaysno524 3 года назад

I'm watching this right after finding out she passed...i want to understand the disease that took her too soon... Rip girl !

@lenac7655 3 года назад

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."

@floridahetherington5164 4 года назад

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. ❤️

@ariatilah8341 3 года назад

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

@shellyortiz1977 3 года назад

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..

@breephoenix111 3 года назад

Fly high you beautiful girl. No more pain or suffering Amy. We will all miss you but I know we will see you again 🙏🦋

@Anniekelseyty 3 года назад

😥😥😥🙏🏻🙏🏻🙏🏻🙏🏻 Tom I'm so sorry that you, the family and the world has lost Amy. She has helped me so much.

@lluviadiramirez4925 3 года назад

My God i just found out its heart brakeing! She was so young!

@poppi-maetaylor4407 3 года назад

What noooo when did she pass away

@astridmortizramirez 3 года назад

😞💔

@luisforeal8676 3 года назад

@@poppi-maetaylor4407 3 days ago... She did a last video. Its her last farewell.

@sabinemeldere7086 3 года назад

@@luisforeal8676 she passed on april 1st. 3 days ago, the video was posted.

@annetteslife 3 года назад

Amy you were an inspiration for those living with disabilities and chronic illnesses! You will be missed! Rest in peace

@lilnikki3233 2 года назад

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.

@eco2geek. 4 года назад

"Is EDS fatal?" Hell, *life* is fatal. Stay safe and thanks for posting the video.

@MyAsteriskLife 3 года назад

Couldn’t say it better!

@BlueBirdsSong 3 года назад

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.

@eco2geek. 3 года назад

@@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" RU-vid 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.

@anntramonti8840 3 года назад

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 ❤️

@ashleygoudreault9706 3 года назад

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.

@Tayluhhh2010 Год назад

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!

@tracikruger6552 4 года назад

So happy to see you! Was so worried. So glad about the house being done. It’s beautiful!

@MyAsteriskLife 3 года назад

👍🏻

@cryssiortiz6977 3 года назад

So sad that she is gone. Rest in Peace, Amy!

@alleylehman1828 4 года назад

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.

@machinech183 4 года назад

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.

@Tashamarie24 4 года назад

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

@sherrydawson6253 3 года назад

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 🙏❤

@desiderata333 3 года назад

Rest in Paradise beautiful, warrior Queen. Fly high. I am heartbroken 💔. My prayers are with her parents and her honey. 🙏🏽

@cathiellamas5240 3 года назад

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.

@rachelbee3949 4 года назад

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!

@markieross9449 3 года назад

So charismatic and inspiring. I've been watching her all day. You are missed by so many. ❤

@Jlynne3323 4 года назад

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. 🤍🖤🤍🖤🤍

@sandrajeffery7005 3 года назад

hey try watching sophie's life thats amys best friend still fighting very day ith her EDS

@Jlynne3323 3 года назад

@@sandrajeffery7005 What’s her channel...I searched Sophie’s Life and I don’t think what came up was her....?

@BamBabyBrenda 3 года назад

I'm sorry you lost her, I just found out

@dewithistle910 3 года назад

Such a mature level headed young girl! God bless her! So sorry for your loss! RIP Lovely Amy...🌈🌻💔

@Loveventing 4 года назад

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!

@rebeccaabney1858 4 года назад

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!!

@veevee306 4 года назад

There are many ways to have sex besides intercourse. Your way of having sex is valid.

@phoebejanemiller1671 4 года назад

🙌🏻🙌🏻🙌🏻 I totally agree!! Sex is the different for every couple, and whatever is mutually enjoyable is 100% valid.

@MysticalAmberMC 4 года назад

i feel like it should be there are different ways to be intimate without sex.

@nigonkouk1770 4 года назад

sex toys''''''''''' ;|)

@NeverSilenceLove 4 года назад

Agree!

@SamirCCat 4 года назад

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.

@deesola9338 3 года назад

I'm so sad💔Amy, you will be missed 🙏🥺

@neen42 3 года назад

😭😭😭. Miss her like a good friend.

@kitcatj9703 4 года назад

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)! 💕

@irenezannier1546 4 года назад

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 💜

@margrettbraddock5769 2 года назад

Crazy how I miss her so much. Wish we could have had her a lil bit longer 🥺🥺

@minerva9359 3 года назад

I’m heartbroken - sympathy to Tom & all of Amy’s loving family & friends. A beautiful soul, lost to the world.....rest easy beautiful princess! 💕💕💕💕💕💕

@hannahzd8097 3 года назад

❤️ I enjoy/find a sense of comfort in watching back these videos as it feels like Amy is still here ❤️

@tinaharner3272 3 года назад

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.

@denbywilliams4348 4 года назад

Who else’s face lit up when u got a notification for Amy’s video 😍🥳

@lynsmith2698 4 года назад

@NWednesdayQuansah 4 года назад

I was so excited!

@Christinesobsevations 4 года назад

Mine !!!!!

@Tashamarie24 4 года назад

@christinerichards9272 4 года назад

Me avid watcher

@lisamichels1825 3 года назад

I’m so so sorry. Amy thank you for your contribution to your fans

@darlenelowe1730 4 года назад

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

@TMOO546 4 года назад

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

@NWednesdayQuansah 4 года назад

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!

@sunny4jenny 3 года назад

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.

@emgoodluck416 3 года назад

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 🖤

@emilywyatt47 3 года назад

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.

@sandrajeffery7005 3 года назад

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

@jademitchell9956 2 года назад

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.

@brittanymason4998 4 года назад

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 💞

@donnaloveall1470 3 года назад

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🙏✝️💕

@danielle6228 4 года назад

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 ❤️

@chriscrow2603 4 года назад

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.

@tiffanyolsen9833 4 года назад

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?

@joshuawayneyork 2 года назад

She's passed away unfortunately.

@SpaceGirl929 4 года назад

Thank you so much for being so open with us. It's so refreshing 🥰

@ashjd55 4 года назад

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!! 💙💖

@pingpaul 3 года назад

RIP Amy!! Blessings and peace, Tom!

@MegaDharrell 4 года назад

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.

@catherinetessier8542 4 года назад

Watching this video was so informative on eds and i just wanted to give you a hug while watching. You are such an inspiration to me and have taught me to accepte my health conditions so that i can still live a life I want to live and to the fullest I can. You are such a beautiful person inside and out it’s unbelievable!! Hope you and your family are staying safe during these crazy times. ❤️❤️

@applejellypucci 3 года назад

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.

@tinaharner3272 3 года назад

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.

@erinhaigh3258 4 года назад

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 ❤️

@missadventurer6981 2 года назад

What is eds?

@TheHuckfinn49 4 года назад

So glad to see you well, Amy. Those of us with chronic conditions can relate! I've been given a short life expectancy as well. I get that. I understand people not believing you. I'm often accused of being a lazy hypochondriac. And, not leaving the house has become a mental trigger as well. Thanks for the video! You empower me! Luv from across the pond.

@NatashaAnne1994 4 года назад

So happy to see you!!! It’s been a while!!! Glad about your house finally being done!!! Hope everything is going well with you and Tom. Xoxox

@heartandseoul1299 4 года назад

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.

@sbeck2639 4 года назад

So happy to hear from you Amy. Sending love right back to you and Tom.

@JayBeckah 4 года назад

This was wonderful, Amy. Informative, supportive, 100% honest, and hopeful. Thanks!

@ronderulijkummar7453 4 года назад

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!

@lisagillard5943 4 года назад

Really happy to see you, Amy! Wishing you all the best.

@SamLov-mi9xo 3 года назад

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.

@SusanMHill-gh6mt 4 года назад

Thank you for being so open. You're such an amazing inspiration.

@TheMadamDragon 4 года назад

I love your openness and all of your videos. I follow both channels. I’m personally going through some health issues and thinking back I’ve had a lot of the related conditions to EDS. I’ve asthma, have had “growing pains” flexible joints since I can remember, I’ve ibs I suffered terribly with vertigo as a teenager, I don’t heal quickly... so so many but my gp just doesn’t take it seriously. I’ve had an ongoing issue since Christmas with my bodies temperature regulation, so I’ve been feeling so ill all of the time. Your videos give me hope that one day I will get to the bottom of things and that I’m resilient and can push through whatever comes ❤️ It’s amazing you have Tom and such a support network around you ❤️

@irishrose7053 3 года назад

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

@celeste7113 4 года назад

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 :)

@leezooka 4 года назад

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

@emilynisbet-forster3551 4 года назад

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

@saraH-yu1mx 4 года назад

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?

@bejul2 4 года назад

Have you ever tried ivig for gastroparesis?

@billdoty6438 3 года назад

I asked in a day in your life video about your mental health. You answered it very well on this video. You are amazing dealing with this day after day . Pray for you mentally 🙏

@kendraklein1672 4 года назад

I always learn so much from your videos! I do not have personal experiences with EDS or know anyone who has it, but you have a great way of answering questions I didn't even know to ask, and then I feel I know some things if I am one day around people with these conditions. Love you Amy ❤❤❤

@justynawelman8381 4 года назад

So happy to see you! I understand you may not be able to make videos regularly because of reasons, but I still love you 💖💖

@NeverSilenceLove 4 года назад

Thank you for sharing about your sex life! It normalizes that not all couples have traditional sex and that is okay.

@eduardopadilla5505 4 года назад

Hello Amy, Excellent to seeyou back looking so good!! You are a very strong woman! Keep living your life to the fullest!! :D Blessings.

@petaks01 4 года назад

So happy to see that you are "ok" in this crazy world. I guess mental health is hard for all of us right now with distancing and isolation.

@shannonouellette9745 4 года назад

Love your videos and how you are so open and honest 💛💛💛 pray your mental health recovers quickly, it's hard but we will be ok💛

@nilllukka 4 года назад

A very informative video, thanks! I've been following you for a few months; I enjoy learning how people with rare conditions live their lives, and your lovely personality got me hooked to your channel. :)

@stephanie5872 4 года назад

Hugs and love to you from another zebra. I'm one year post PAO on my hip and have cEDS. The high risk isolation sucks. I'm glad you have a great support system. All the other zebras are there with you in spirit and support you!

@alysonjade2461 4 года назад

Soooo good to see your beautiful face again!!! I’ve truly missed your videos so so much!!! Sending tons of love your way!!!

@Dulcimerist 3 года назад

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.

@carlaghmassey-southall9208 4 года назад

Happy EDS awareness month glad your safe and well

@mirgrave 4 года назад

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.

@illumindonnaughty 3 года назад

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

@nshvh 4 года назад

Glad to see a video from you :) love your insight and attitude ❤❤

@LouLou-bs9cr 4 года назад

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

@kellypotter6954 4 года назад

I hope your mental health situation gets better soon! You’re not alone Amy! 💕

@pauldevery6173 4 года назад

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.

@pennysue8849 4 года назад

Nice to see you Amy ! 💜💜💜💜💜

@kbellmurray 3 года назад

Rest In Peace, beautiful soul ❤️

@nicolesmith786 4 года назад

Seriously TPN is doing you right. You look so beautiful and look so healthy. So happy you uploaded. I always look forward to them. :-)

@vickybarresi333 4 года назад

Happy to see you back on RU-vid , Love you Amy xxxooo

@avahill3946 4 года назад

First off, I think you answered my question from Instagram, and thank you very much its so helpful to hear about these things and feel relatable. I would love to hear more about your symptoms as a child/teenager and how those evolved with your other conditions as well because I'm in a similar boat as you described with your teenaged years.

@lisaioannou6758 4 года назад

So so so happy to see you. Feel better. Stay strong. ❤️❤️❤️❤️

@jessicabellone913 3 года назад

Rest easy sweet girl ❤️❤️ No more pain and suffering....

@neen42 3 года назад

So much pain and suffering in 24 years, but so much love and life also

@desiderata333 3 года назад

@@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.

@chinchillamdgamer 3 года назад

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

@neen42 3 года назад

@@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.

@albussnape2 4 года назад

Also so happy to see you! Yay! 🤗I think mental health issues have become more widespread and worse during this pandemic. Therapists must be keeping busy by phone or Zoom or whatever. If you’re in a down spell and don’t have the energy to vlog, maybe keep a brief prepared statement to post, just saying you’re not feeling well (or something you choose to say). I’m sure that many of us from out here who do really care would send encouragement and love, or maybe share a funny video. Sometimes that connection to empathy and compassion can help a lot. 💖

@sarahchapman7999 4 года назад

Thank you so much for all you do. Your videos on both of your channels have helped me to piece together my own diagnoses and figure out why some crazy things have happened in my family. If you ever need to chat, I would be more than happy to help since you have helped me so much.

@souljourney5386 3 года назад

You’re amazing 💕💕 I have fibromyalgia and sjorgens syndrome I don’t know how you cope I think you’re incredible, such an inspiration xxx

@savannahcruthers1783 4 года назад

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