Wear #REDS4VEDS to Support People Living with Vascular Ehlers-Danlos SyndromePosted May 18, 2018
Friday, May 18th is #REDS4VEDS Day around the world. Help us raise global awareness for vascular Ehlers-Danlos syndrome by wearing RED and posting on social media with #REDS4VEDS Day.
Caused by a mutation in collagen type III, a connective tissue protein present in the vascular tissues, Vascular Ehlers-Danlos syndrome (vEDS) is a serious, life-threatening genetic connective tissue disorder.
Not only do individuals with vEDS have hypermobile joints and the thin, delicate skin found in many Ehlers-Danlos types, their arteries and internal organs are also fragile and prone to rupture and/or aneurysm, complications which can be fatal.
“With greater awareness, research, and funding, our entire community of medical professionals, patients, and families, hopes to find new ways to improve detection, diagnosis, and outcomes for those living with vEDS throughout the world,” states Lara Bloom, International Executive Director of The Ehlers-Danlos Society.
REDS4VEDS DAY: RAISING GLOBAL AWARENESS
Started by Annabelle’s Challenge in 2015, #REDS4VEDS Day seeks to bring much-needed attention to this dangerous condition. Founded by Jared and Sarah Griffin in 2013 after their daughter Annabelle was diagnosed with vascular EDS, Annabelle’s Challenge (a registered UK-based charity) seeks to improve patient outcomes through greater awareness of vascular EDS within the general public—and among healthcare professionals around the world.
Voices of Hope. Voices of Strength. In their own words, patients living with vascular EDS.
Twenty-eight years of waiting and wondering
“Because of the diagnosis, we now know that the severe pain I have experienced in the last year and a half was probably due to a dissected artery that wouldn’t heal because of physical therapy and excessive stretching. Once we thought that might be the case, I stopped the stretching and three months later had my first CT scan, which showed a pseudoaneurysm in that area. It took 28 years to get my story to make sense.” — Katelyn
From party tricks to self-diagnosis, a doctor becomes the patient
“Throughout my life I have had multiple unexplained medical presentations that didn’t quite fit together. At a hospital appointment as a baby, I was described by a young medical student as ‘a bit funny looking,’ much to the annoyance of both the consultant and my parents. Not forgetting my favourite party trick of showing off my bendy fingers! The lead up to my diagnosis was lengthy and stressful. It really all started at medical school where I noticed large bruises appearing on my legs for no reason. This, combined with learning about connective tissues disorders in lectures and meeting a patient on the ward with hypermobile EDS, got me thinking, ‘Hey, that sounds just like me!’.” — Gemma
A family copes
“I’m a 35-year-old single mother with vascular EDS. I have a 12 yr old son with vEDS. I had an older sister who died at the age of 19 from possible vEDS. My son was diagnosed at 3. I wasn’t diagnosed until my mid 20’s. I ended up with a rupture in my colon.” — Candace
Zebra Strong: A Sister Celebrates Her Sibling’s Strength
“I will never forget how excited my sister was to cross the marathon finish line that day. It personally took me several days to process what had just happened and how my sister accomplished her goal. In some ways, the race was a metaphor for how determined Grace is in life. No matter what is thrown at her—rain, sleet, snow, or EDS—she gets through it with a spirit and outlook that is unique to her.” — Amanda
Hope from the heart of a poet
“I’ll stay behind, I’ll catch up, you’ll bump me as you pass
I’ll wait and rest and contemplate, how much longer this will last
You’ll stare at me and wonder why, I don’t move as though you do
Another step, another minute, I only wish the fact you knew” — Bridgette
Categorized in: Ehlers-Danlos in the News