Vascular Ehlers Danlos Syndrome - Vote for HOPE

[hometon1]

i see so many lives that suffer from VEDS and EDS, and one of them being my own. . I have MVP, and hevey damege to my heart. last month i was given the news that i was not expected to live into my late twenties. at the moment i can not get my heart vavles replaced due to complecations of my heart. it is likly that i will never get the surgery i need. EDS in all its types effects around roughly around 700,000 people. your story is touching

[loveabeyta]

I have Ehlers Danlos Syndrome, Classical type. Both my father and grandfather died before ever diagnosed..its really hopefull to see that people are tryin to get our disease reconized..I hope for the day when awarness for EDS is as big as aids, or cancer, or any other cronic/terminal disease...

[loveabeyta]

I have Ehlers Danlos Syndrome, Classical type. Both my father and grandfather died before ever diagnosed..its really hopefull to see that people are tryin to get our disease reconized..I hope for the day when awarness for EDS is as big as aids, or cancer, or any other cronic/terminal disease...

[stupidkittydumdum]

I cried when I watched this video. Our family of nine has had 5 people affected by this condition. Two of of my four brothers passed away - one of them was 41 and the other 52 (just lost him a month ago). Hoping for a miracle to happen so that we don't lose anyone else. So sorry for the loss of your husband and the understandable fear over your son's diagnosis. My prayers are with you

[Antigen01]

God will cure you. Open your heart to Jesus ......

If God can save the Israelites by dividing the red sea, If Jesus can heal the sick as we read in new testament.He surely can heal you !!!!. Faith,absolute faith and open your heart to him and you will see wonders.

[Elfins]

Your story made my soul cry with pain, we are differnt in the number of the disease but kindred sisters all the same,My beautiful daughter is now 18, she has Eds3/Cross overs, she suffers so much....... My heart goes out to you xxxx

[ddvaughan]

@Elfins Thank you! I saw your video of your daughter where you talk about doctors thinking they know what's best for her. It struck such a chord in me; I made all my friends watch it! We are sisters indeed - I'm grateful for all you've done to help generate awareness and pray your daughter finds some relief.

[sanvalentin67]

Thank you for sharing your life. I pray that God will provide you with the strength and courage to continue the battle. I'm so sorry to here about your husband and your son. But in all things, God is in charge. My wife has Type IV EDS and I nearly lost her in 2005 and 2006. But God has a plan for her, so she lives. I hope you have a blessed 2011. Every day is a gift. ~Peace

AJM

[teckiemom]

As the wife of a husband with Marfan syndrome & with I and some of my children (prior marriage) with an EDS / Marfan type related disorder (not confirmed yet) I can relate to a little of what your family has gone through. We will keep you in our thoughts & I think your husband & son would be proud of this touching video! I will proudly add it to my Marfan & related disorder playlist if that's ok with you.

[ddvaughan]

@teckiemom Thank you for your comment, and yes, it's definitely o.k. if you add it to your Marfan info. I hope your family is making progress toward an accurate diagnosis and that all are doing well.

[teckiemom]

@ddvaughan

Thanks so much! We are hoping to get into the clinic before the NMF convention this summer to see if they can pin it down. We will get it figured out! :-)

[tcscott17]

I aslo live with EDS Classical type though I am so sorry for the loss and totally agree we need to get more help curing this disease anyone living with it knows the struggles it brings to peoples lives thanks so much for sharing your story

[EternalFantasy13]

the picture with him holding his kid almost made me cry

[mystery8881]

Is it difficult to get this diagnosis? I have fibromyalgia but I experience some joint discomfort and heart issues such as heart palpitations and general feeling of weakness.... and I'm just 22...

[ddvaughan]

@mystery8881 Thankfully, science is improving and getting a diagnosis is much easier provided you are working with a genetics clinic that is using the most current information. As far as the Vascular type is concerned, diagnosis can be made accurately with either a skin biopsy or blood test. Depending on your location though, access to these tests may be limited. If you email, I can try and see who's close to you.

[gringoboy9]

I just want to say that ,I am deeply affected by your story as my family has the genetic traits of ehlers danlos hypermobile type,even that is no comfort as you well know .I have never understood it in myself even though it is there ,and it is true Doctors at most are by standers,which in todays day and age is deplorable.I will pray and meditate for a cure and deeper awareness for the medical professionals.My niece suffers from it the worst,my thoughts are with you.

[nikistar19]

i cannot stop crying .... that's ok...that is RIGHT actually...... my DEEP love is with YOU and YOUR SON..... I have VEDS and have just this week been told i also have cancer....they had ignored all my symptoms as they know nothing about VEDS here!!!!!...and obviously haven't even heard of a 'google'.... I have a 19 year old son....he also has VEDS...we both also have HEDS.... ALL i can give you is LOVE...... and someone out there MUST help soon xxxxxxxxxxxxxxxxxxxxxxxx

[MimiSkitty]

I CRIIIED! I am so SORRY that happened! :( I have EDS, too, but not really sure what type. For right now, I just know that my joints hurt horribly. I am hoping it's just hypermobility. I haven't been to a doctor about it in YEARS... Probably over 10 years....

[ddvaughan]

@MimiSkitty Thank you for the comment ~ my son is almost 13 now and is doing o.k.; I feel like I'm holding my breath most days . . . sometimes I "forget" what is really going on and life feels normal for a bit, but then I am reminded one way or another. PLEASE go get a check up . . . . even if it is "just hypermobility" . . . there are still important things to keep track of and new science developing all the time. At least think about it, ok??

[MimiSkitty]

@ddvaughan I will keep praying for your son. :) And I wish I could go see a Doctor, but I have no insurance. Do you have any suggestions? My friends who don't really know what EDS is, keep telling me to find a job, but I don't know what I can do, really, since it seems so hard to keep standing for 8 hours a day... It's really getting bad.

[ddvaughan]

@MimiSkitty If you want, you can email me at debdossjones@yahoo.com and let me know where you live; I may have some EDS friends in that area who could make better suggestions b/c they'd be familiar with doctors and services near you. The whole insurance mess really gets under my skin . . . you are not the first person to tell me they are fighting this with no insurance and I'm sure you won't be the last . . . I'm looking forward to hearing more from you!

[MimiSkitty]

@ddvaughan Okay. :) Thank you so much. No insurance really is a pain. And being an immigrant is even worse. It's really hard to get papers together, like this.

They didn't find out that I have EDS, until I was about 12 years old. The first thing they noticed was my Mitral-Valve Prolapse. My Doctor was checking my heart out when I was pretty young and noticed it sounded off.

Sometimes, my heart really hurts and I don't know why. It feels as if too much 'air' is passing through, or something.

[silentfades]

my sincere condolences and you are in my thoughts

and prayers as I write this

Marc

[ddvaughan]

@silentfades Thank you, Marc for your prayers and your comment. I sincerely appreciate it!

[mrmarksmanftw1]

this is going to be a bit long sorry, i don't know what you've gone through but i can tell you this, my friend (who i hung out with almost every day) had EDS type 4 -vascular- its one of the rarest forms of eds and he died excatly a month ago -8/18/10- he was only 14 years of age i dearly miss him, your video hasn't "touched" me but i can somewhat understand, and even though this may meen nothing to you i'm one of those kids who don't care about life, my own mother has called me cynical.........

[ddvaughan]

Thanks for commenting . . . I'm so sorry to hear about your friend; I can't imagine what you must be going through. My son will be 13 soon, and I worry about him b/c many young people have been lost around the same age as your friend. Yes, it is rare - but it's gotten 2/3 of my family so "rare" is a relative term. Cynicism doesn't bother me ~ I've been through it enough in my life ~ it's pretty natural sometimes. I'd like to know more about ur friend; email me off youtube if you want.

[McKinney1500]

@mrmarksmanftw1 you post a comment saying this video has not touched you, then you write a sob story begging for attention? what the heck! this video is sad and that was a dumb comment stop complaining about your life...i'm sure it's nothing compared to this.

[mrmarksmanftw1]

@McKinney1500 i'm not begging for attention -.- i'm just trying to show that i've somewhat gone through something a little bit similar, not sure if it would help or not but couldn't hurt. because your comment really wasn't meen i'm not gunna go ape shit on you but still i'm not begging for attention -.-

[vivisonga1111]

god bless you and ur son :) i have EDS type lll and im aware of vascular eds. i will vote and i send u much love and strength. we are many battling and holding on to our lives. my heart is with you and with all other who are suffering from all types of eds. xoxo

[ddvaughan]

@vivisonga1111 Thanks for writing and I'm sorry to hear you have any form of EDS; there ARE so many of us fighting ~ I think one of the most important things is that we hang onto each other and stick together . . . God knows we need more friends who understand what we're all going through! I hope things are well with you.

Debbie

[SuperRandomJelly]

All of us with EDS and friends and family affected by it...we thank you.

[NJGirlinGA]

An amazing story. You are in my thoughts and prayers. Chase is at it again in June-july 2010. EDS today can win 250K. They are currently in 1st place. Please vote for them! You can do this through facebook:

apps.facebook.com/chasecommuni­tygiving/charities/912041609-e­ds-today

[kcr1662]

Debbie, God Bless you and your little boy. Hopefully science will find a way to protect your son and mine. We just sent the labwork to test my 15 year old son (my only child) for vascular EDS. I pray that it comes back negative even if it means that we still have no answers. We've already tested for Marfan's and Loeys-Dietz. My prayers are with you.

[ddvaughan]

@kcr1662 Please let me know how your son's testing turns out.

[EhlersDanlosEDS]

Though 50% of EDS cases are inherited from a parent another 50% of the cases are caused by spontaneous mutations without a parent having the mutation or a family history of the disorder.

[EhlersDanlosEDS]

Deb, thank you for this moving, heartfelt tribute. It's truly powerful and has touched many hearts. You have shown the real faces those affected by EDS and those that truly LOVE them! Your in my heart, my dear friend. Thank You!!! Love ya!

[deedleloves]

Debbie, Your video is a beautiful tribute to your husband, and will be treasured forever by your son. My 15 year old daughter was diagnosed with EDS !IV when she was twelve. Hopefully, John's Hopkin's, which is doing much research on this syndrome, will be able to help your son and my daughter in the near future. Sharing your loss with the EDS community is selfless and brave. My prayers are with you always. Dee

[jonnysthedude]

Beautiful video, made me cry, i too have eds type 4, so does my sister. We both have vascular problems, but are being helped by NHS. Take care, Jonny.x

[justpeg2003]

I'm pretty sure I posted this already but....Love that you shared this Debbie. Loved Josh. His life touched so many. My son, James, cried so hard at his funeral. His testimony is hard to follow. Praying so much for Karsten and you.

[remedy5678]

So sorry for your loss, beautiful video...beautiful baby

/God bless you and the boy

[rigbyfin]

This is so moving. I lost my brother 6 years ago. I watched this video on the anniversary of his death. And i wept, as i am sure you do too. I pray that they find a cure soon. God bless you

[WeHeartFallen]

this video is so moving and a great way to educate people on this syndrome. I really appreciate your sharing your tradegy with everyone to enlighten them.

[justpeg2003]

OMG Debbie! How awesome is this video. Thank You so much for posting it.

[rayredding72]

Its been awhile since I've cried this hard. Josh, I miss you and will never forget you.