Ehlers-Danlos Memorial Tribute

[paintedchicken]

don't forget, for those who have types other than the vascular type, the labels are just labels, the disorder doesn't care about labels. Each type is diagnosed by the predominant features, but most types have some features from the other types. Don't assume a hypermobile patient isn't at risk for vascular issues. i am EDS III and i ended up in the ER with a broken artery. peace..

[eileens5]

im 13... they think i have this. i know the vascular type is the only type that is deadly... but i'm scared anyhow

[bannanapancake]

Stay strong....Your fighting a brave battle...best wishes to you and your family...:)

[kandinsky51]

insanesticky

Duck off, you try living with this!!

[nycgoodfriend]

i also have vascular type 4

[nycgoodfriend]

i'm 32 years old and i had a stroke lossing my left side of my body just lifting chars on my head an d i ruptured a vessel inmy neck that goues to my brain that caused me to have a stoke in my sleep. just thing it was just a headache and i went to sleep to wake not able to move my entire left side of my body

[wayseerD333]

@nycgoodfriend Bless You, NYC! I blew out tendons in my only good hand, opening a can of seet potatoes on Thanksgiving. Used to tease my brother cuz he blew out his knee while filing papers, at work. We must re-arrange our DNA. wayseerD333

[adparkerrezk]

it's sad that people die off this. hope they find a cure. so so many people won't die from it.

[MartinoSalvatore]

Hi, how many types of this patology are? and Do this people die almost always young, I mean before fortys? thankas a lot

[bellingerga]

My mother passed away due to an arterial rupture, she had Ehlers danlos syndrome, and not even the type IV.

[fizzandpaula]

my son is 12years old and suffers with eds vascular. he has already had an artery rupture which led to his dominant arm been amputated, he has also suffered an artery tear in his groin. throughout all this he remains very strong in the respect of how serious his condition is. it's very frustrating at the minimal amount of doctors and specialists that know anything about this life threatening condition.

[bannanapancake]

Thanks for sharing....I met someone who has this tonight....I have a lot of respect for you and your son for fighting this...best wishes from my wife and I...

[xpsykoxpixiex]

Thanks for making this =) I have chronic (like "mild" is any better??) EDS Type 1 and my family just DO NOT understand. Bah!

I as 17 when I finally got diagnosed and just having a name for it all was such an overwhelming relief. Hopefully vids like yours will help raise awareness and public interest, and people won't have to wait as long as most of us do to get diagnosed and treated =)

<33 Kitty

[BoxxingTheStars]

All these videos showing all the stupid party tricks they call it, I dont even watch ever. It makes me sick. Instead of showing the reality of most people with E.D.S. that live every day of their live in agony. To the public it looks like people with E.D.S. are a bunch of clowns. Anyway, thats my two cents about that subject.

[kaggyx]

Thing is that we have an almost unknown problem. Any publicity is better than no publicity is the way that I look at it.

[BoxxingTheStars]

I have E.D.S. myself. I'm curious what types of medication everyone else that has it is on?

[kladams87]

Boxxing,

Are you taking any medications? I also have EDS. I am almost 21 years old and feel like i am 80. I am in constant pain. Do you know of anything that helps?

[BoxxingTheStars]

Ya bro I do, thats why I asked the question. To see how many people were treating it the same way, or how they are treating it. I know everyone has different levels of pain though. But everything you just said was every word that comes out of my mouth when I try to describe my day. I say I'm almost 26 and feel like I'm 80. It doesnt sound like you take anything. The problem with most Dr's is they dont have a clue what your really going threw so their no help to you.

[kaggyx]

I'm currently on Lyrica for the pain, and it's helped more than any of the traditional pain killers that I was on in the past. There are less side effects as well. I hope that helps.

[insanesticky]

people its called weed try it sometime

[marfanskid]

@insanesticky Right because weed fixes aneurisms (I hope you sense my sarcasm because I'm laying it on pretty thick right now). 

[znayou]

what is this song called?

[Rekisum]

EDS is not just EDS. It's in so many degrees and different people experience different things. Some is getting through life easily and others not. So dr1verdown, i'm glad that you are getting through life without severe problems, but others don't. I don't, and i'm not even serverely hit my this disease. Some die very young and have a very shitty life, it's only few thats having this severe degree that kills them very young. For some life is a battle with EDS and some are brave. Continues...

[Rekisum]

You should praise your self lucky... check out what this disease do and don't before you write. Check it out... I can't work construction... i can't work over three hours a day, and the work must not be to hard physical.

[dr1verdown]

brave and courageous battle? Not to put anyone in this video down, but i have Ehlers Danlos and i've lived a normal life so far. I couldnt play sports in school, that was it. I work construction now. Nothing different from anyone else. My mom had it too

[YunaDono]

I have Ehlers-Danlos Syndrome as well, but there are some people that have it so severe that it takes their lives before they really get the chance to go live... sometimes even takes lives of children.

[xshineythingsx]

I have EDS. It affects my heart also where i have to take the same medication that an 80 year okd takes and im 18 years old. I have brittle bones and atheritus, ialso need to undergo surgery as dislocations mean i now have 2 fractured shoulder sockets and 1 fractured hip socket. How about an EDS trade off? I'd LOVE yours mate.

[DragonKhana]

Heh. Didn't realize Ehler Danlos was the cause of death for some, though I guess it would technically be responsible. I ran this search because I'm frustrated, my blasted back went out. Again. Ehlers Danlos here. S'pose they'd call it my cause of death if I'd been driving when it, or some other body part, randomly failed.

*sighs* I'm sorry these people died. I wish there was something I could Do instead of being bedridden.

[gwranch]

Hello everyone with Eds and veds,

i am sending you all hugs your way from California... We must find a cure..

Love Grace

[Tilly2cats]

I lost my brother to EDS in November 07, My mother in 1999. I have EDS too. Stay strong ! One love xxx

[gwranch]

Hello Tilly2cats,

I am so sorry, you lost your Brother and your mom to Veds.

I too have Veds. Myname is Grace. If you would like to contact me. Everyone knows me..

Stay strong and Iam sending hugs to you..

[digitaltotem]

I have severe type II with mild type I skin involvement. I was diagnosed 6 years ago at age 16, I've had both heels fused, have lost most feeling in my left shoulder and have rupture 2 vertebral discs. I have a severe herniation of my stomach up through my diaphragm and bleeding ulcers.

[digitaltotem]

They wouldn't let me make this long enough the first time around. As far as treatment goes, I see a pain management clinic, the primary medication I use for pain is Methadone, which has very little affect other than tremendous reduction of pain. There is a national foundation with much more info just google it

[Canichenoir]

I have this and feel pain every day. It's not a severe form, but totally present in my everyday life. Sometimes it makes school hard. Does anyone else have GI Problems along with it? I do so it means I can't have anti-inflamitories or any pain meds. :(

[digitaltotem]

I hope you read this, so you don't have to hurt talk to someone about Methadone. It is a very strong pain management drug, with very little GI distress.

[ReineDeLaSeine14]

I have EDS as well but I do not have a type as I overlap. I am 19 and was diagnosed eight and a half months ago. My sister was diagnosed with type III in June (age 25) but her biopsy showed a lack of collagen so I am seeing an EDS specialist with my mom who has it too. She's 48.

I'm glad my brother escaped.

[psychopopek]

Hi I have EDS and am being shoved around to doctors like crazy where are you seeing the specialist and how did you get to them?????

[digitaltotem]

When I was 16 (6 years ago) I saw a man at Cincinnati Children's Hospital in Cincinnati OH. He was supposed to be the preeminant doctor in the study and treatment of EDS. I don't know where you are, but you can look them up and talk to them about finding someone close to you, they run clinics every wednesday.

[psychopopek]

So did you have hi amounts of copper then too? And thanx for the advice and help I live in Las Vegas

[digitaltotem]

I have elevated levels of copper, they've never made a big deal out of it, but my skin galvanicity is very high I'll run the charge out of a watch battery within hours of putting it on. Skin galvanicity is also what they measure for a lie detector test.

The docs name is Winstrop you may be able to find his new location via google

[psychopopek]

Thank you I live in Las Vegas Nevada, but please keep me updated

[ZoeyMacaroni]

Hi everyone I have some questions: Does everyone have foot bubbles (heel area)when you stand up? Does everyone have tibial rotation? Slight cleft chin? Fine hair like a silky terrier? Vericose veins? Stomach pains chronic-constant? Hip trouble after running? Lung issues after running? Has anyone heard of follic acid and hydroxylysine defeceincies? Thank you in advance! Thank you for putting this on Youtube!

[gomezpits]

my son is 5 and he has classical type EDS.

[EkimKask]

Hi guys. I am 17 years old and was diagnosed with EDS when i was about 3. I have never met anyone with EDS before. Life kinda sucks that you cant play sports, but i just deal with it and have other hobbies i enjoy. I would appreciate a friend who also has EDS. Message me if you want. Mike

[Canichenoir]

I have it too and am 17. It's not as severe as many individuals but I feel pain very day. Not playing sports...I hear you...1 did archery for 7 years until that became too painful. About 9 years ago I found a love for music though. It balances out. marching season is hard, but never stopped me. Now I manage a lot of sprots teams so I can still enjoy them with out doing them.

[LilAmigo70]

Hello everyone, I too have EDS, I was diagnosed at birth and ever since my birth, i had to live only with the support of family and friends. This memorial video has touched me, making me realize how others have fared with EDS, lived and died unfairly with EDS. I just pray that I can live a full and happy life, with a wife, kids, and friends that have my support. Id love to know anyone else with EDS better, so I can know that im not alone in the world. Peace

[cappedkey]

I feel sorry for the kids that had not even had the chance to experience to really live and grow up and have children,this almost made me cry.

[djvmg]

I was lucky to have been diagnosed at birth by an amazing doctor. I've just turned 40 and have two beautiful children who thankfully don't have EDS.

Thank you to all the people who have done these videos so that we frustrated sufferers can connect with each other and the world is maybe a little more aware of what we go through every day. Thanks

[princessbelle27]

Thank you so much for posting this. I was diagnosed when I was 16, I don't have vascular. But, my Dr.s don't know to much more. Does anyone know any REALLY good DR.s for EDS patients or Drs. who spealize. Please message me.

[nzdeath]

guess what i am double jointed does that mean i have EDS :{ if i do i dont want to die :(

[peapeam]

Hi, not all that are double jointed, have EDS. And amongst those with EDS, the vascular type, which most often cause fatal complications, is the most rare type. The most common type is the hypermobile type, which has normal life expectancy. I have HEDS myself.

[EhlersDanlosEDS]

Hi peapeam,

That's true not everyone who is double jointed has EDS. Actually, there are 3 most common types in this order -the Hypermobile, Classical, and the Vascular Type(VEDS). Medical complication can occur in any type of EDS.

[EhlersDanlosEDS]

Dear nzdeath,

That depends on how double jointed you are, and where. Having EDS doesn't mean that you are going to die. Many die because they aren't diagnosed with the Vascular type of EDS. If you want to find out see a Geneticist, okay?

[nzdeath]

ok thank so very much i have a question why do people keep marking me as spam :(

[YourLordVicious]

Some of these people barely made it to 20.... i have EDS as well, so did my late father, this made me ball and scared as hell.

[gypsyfirestorm]

Thank you so much for this. I've recently begun the long process of possibly getting diagnosed with either EDS IV or VIII. It's a terrifying thing. But in a way it's nice to know I'm not alone.

[phoenixdown007]

Thank you so much; this was a truly touching memorial. I am 14 years old with hypermobile EDS, and it really... it made me cry. I felt like I could connect with them- empathize and share smiles with them. My heart reaches out to those who struggled or are struggling as am I. This is exactly what needs to be done to show that EDS is a real disease that needs real attention and awareness. I don't think many people know how truly hard it is to live with EDS (as DizzyBroad says, it's hell)!

[peapeam]

Just had to give you a cyberhug! Living with EDS sure is a challenge, no matter which type! But I feel real blessed, for EDS has given me a family all over the world, a family of fantastic human beings! Some are with us today here, some in our hearts, they will never be forgotten, they were all fabulous, unique individuals who we will love always! It is wonderful that YouTube is used to spread the word too!

[dlmckinney]

I am 39 years old with Vascular Type EDS. I would like to know if these people had Vascular or another type of EDS. It would be helpful to know the cause of death also.

[peapeam]

Hi, as far as I know, all but Doug Pettitt had VEDS. Doug, who passed in 1998, was diagnosed with HEDS, but maybe he was misdiagnosed? He was a fantastic man, he was going to med school to make a difference for his fellow EDS'ers, but sadly he died... He was such an upbeat and positive guy, always had a nice word to share with us others on the EDS mailing list we had back then. I'll never forget him! :)

[EhlersDanlosEDS]

Hi peapeam,

I believe that Doug had Vascular EDS. He was a great guy and he touched many people along the way. He will always be remembered. There are a few who didn't have VEDS, who have also passed away.

[EhlersDanlosEDS]

Hi dlmckinney,

Most of those featured on this memorial did have VEDS. There are some who do not have a postive diagnosis for Vascular EDS, that have also died.

This video isn't fully complete yet, it only features some of those that have passed away.

[boldmares]

Thank you for doing this. Awareness is key for the future generations. Make the Doc's AWARE that this is here and may be more common than 1st thought. Stay fit everybody, persevere, preserve what's left and for God's sake, let's live!!

[plummelum]

let's not scare people here, guys! there is only one deadly EDS - vascular. there aren't any treatmentfor this. it's genetic! stay fit and know your boundaries is the key! i have classic, so i'm not just an ignorant. lovely memorial! went straight to my heart

[DizzyBroad]

yes... true in a sense... a major sense.. but... i would not agree with 'there is only 'one' deadly EDS'.

directly, maybe, maybe... but since there is not a cure, what alleviates symptoms kills us. That part of the hell hasn't even been documented yet, so u can't disagree with that.

Also, I believe that doctors misdiagnose the types of EDS all of the time, as well as certain types can mutate again. Just saying that organ 'failure' will be the likelihood of my death, and i'm "type3".. so far.

[peapeam]

I'm sure you're correct. Doc's are humans too, and this is complicated. Some of us overlap too, I guess that we all have our own type of EDS, at least within our family... But luckily, knowledge gets better each year. A lot has happened since I got diagnosed in 97, that's for sure!

[EhlersDanlosEDS]

Dear plummelum,

We weren't trying to scare anyone here, we were remembering and paying tribute to those who lost their lives because of EDS. We were remembering them! There are many who do not have Vascular EDS who have also passed away because of EDS complications. It's always better to be prepared and knowledgeable about all aspects (medical) related to EDS and the possible complications that could occur in any type of EDS.

[peapeam]

This was a beautiful tribute! EDS gives those of us who has it, challenges every day, but I have high hopes that we finally will get real treatment for EDS, treatment that will go to the root of it! And that people also will get diagnosed early, so lives can be saved and relief given! It is obvious that the efforts to inform the medical community, has an effect! A lot has happened since I was diagnosed! :)

[GoldenEyedCat]

Thank you, thank you , thank you!! My heart was so touched by this memorial. I have Ehlers Danlos syndrome and I can say that more of the world needs to be aware of it. I agree with Dizzy... EDS is hell.

[DizzyBroad]

Thank you for posting this. And AHHH! u made me cry. I have EDS, and this was a real eye opener to further our work into finding some sort of cure, even if that means prevention for those that don't have this hell, yet.