Vascular Ehlers Danlos Syndrome - Vote for HOPE

Vote for Hope at -
http://apps.facebook.com/chasecommunitygiving/charities/235097

Vascular Ehlers Danlos Syndrome, though considered a "rare" disorder, affects thousands of families in the U.S. and around the world. This is the story of how it changed my life; and what you can do to help us. January 15th - January 22nd you can vote on Facebook for Ehlers Danlos Syndrome Network CARES to receive money from Chase Community Giving to fund life-changing research at Johns Hopkins University.

Ehlers Danlos Syndrome is the name given to a group of Connective Tissue Disorders which result from genetic mutations causing the very building blocks of our cells, Collagen, to be either severely underproduced, or severely faulty.

Other types of Ehlers Danlos Syndrome include: Classical, Hypermobility, Kyphoscoliosis, Dermatosparaxis, and Tenascin-X Deficiency. Regardless of the type an individual is diagnosed with, their lives will be forever changed, as will the lives of their families.

Please visit Ehlers Danlos Network C.A.R.E.S. at ehlersdanlosnetwork.org for more information on types, research, awareness, and support for those affected.

Category:

Nonprofits & Activism

Tags:

• Hope
• Chase Giving
• Ehlers-Danlos
• EDS IV
• VEDS
• Vascular EDS
• Aneurysm
• Cure
• Research
• Johns Hopkins
• Dr. Hal Dietz
• Aortic Abdmonial Aneurysm
• Genetics
• Golf
• Tiger Woods
• David Duvall
• PGA

[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.

[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.

[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.

[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.

[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! :-)