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.

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.

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.

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 🕊🙏💜

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!

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

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

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."

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

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

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

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

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

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..

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 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.

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

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. 🤍🖤🤍🖤🤍

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

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!

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 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

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

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

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.

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!

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

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!

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.

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)! 💕

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!!

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 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

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

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 💜

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 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

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 💞

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 ❤️

I'm so sad💔Amy, you will be missed 🙏🥺

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 🖤

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.

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

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. ❤️❤️

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 ❤️

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!! 💙💖

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 ❤️

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

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

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?

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.

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!

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

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

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.

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 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 🙏

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 ❤❤❤

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.

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

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🙏✝️💕

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

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.

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

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

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

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💛

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.

RIP Amy!! Blessings and peace, Tom!

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 :)

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

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

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!

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.

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.

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.

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. 💖

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

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

KZfaq just put this in my recommended. Such a heartbreaking thing still, and that title just 😥

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

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

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.

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.

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

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

I love getting your notifications i hate hearing that your eds is getting worse as your getting older. I love seeing your smile hope to see more videos when you feel better much love ❤

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

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

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. :)

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.

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

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

Thanks for your channel. I have hEDS and one of my relatives thought it was the same as Hypermobility. And she always referred to it as my hypermobilty but she watched your what is EDS video and she said she understands it better now. That it’s more than just be hypermobile it comes with all the internal things