Living with EDS - Your story

My Fight with EDS

Simon Burnham

My fight with EDS started at a young age; I feel that knowing I had EDS at a younger age gave me an advantage on how to deal with it.

It started when I was very young; both knee caps used to pop out of joint on a regular basis and every day I spent most evenings at my physio trying to strengthen my knee caps up. At this point they did not know I had EDS; it was a very painful time for me doing exercise with the physio, and they had to physically hold my knee cap in place so it would not pop out. After a while the doctor sent me to Great Ormond Street in London for tests. I spent two horrific weeks there while every doctor and student doctor was trying to figure out what was wrong. Eventually they diagnosed me with Hypermobility EDS; at least then we could work on a fix.

I had a awful time at school because I found even holding pens was painful for me, so it was nice to at least be diagnosed. When we got back to Plymouth, my mother and my doctor had me booked in for a knee operation; a good thing they did as I would never have gone! Anyway, the operation went well and I spent 4 months in a cast and 6 months of hard physio which was the worst time of my young life. The next year I decided now it's my time; I swam every day in my club and surfed everyday down my local beach as I wanted to build on those muscles that I never had as a young boy and got on with my life.

Yes I had some problems, especially when stupid people used to tap on the back of my knee and then it popped out and hurt a lot made me bed ridden for weeks. Career wise, I knew I wanted to be a pilot so I had to exercise as much as I could to pass the medical. The day came for my medical and I passed, and now I am living the dream flying in Africa! Of course I have to keep on top of my EDS, but other than that it has not bothered me as of yet. My biggest advice for people with EDS like me, is not to give up exercise and swim as much as you can and just crack on with life.


Click here to follow Simon on Twitter


Emily's Fight

After being diagnosed with EDS Type 3, Autonomic Dysfunction, and Thoracic-Outlet Syndrome, at 13, my life changed quickly.  There's always another doctor to see or another test to be done.


I wish more than anything for a day when life can go back to normal; no more infusions, tests, needles, blood draws, procedures, bone subluxations (partial dislocations), wheel-chairs, or hospitals.  I know that seeing that day in my life-time is unlikely.  Research for rare and genetic disorders, although promising, is scarce.  That's why I started this campaign. 


I hope to start a non-profit supporting those with rare and genetic disorders (mainly in childhood) someday, but until then, I will be using my voice to be an advocate for all of those lost and fighting.

You can follow Emily on twitter, facebook and her amazing website

Jodie Akers

Jodie Akers illustrates the different joint movements with Ehlers-Danlos Syndrome. 

Aimee Foley

Aimee Foley is a 26 year old brave & inspirational young woman from Midleton Co Cork. She has been battling illness for 6 years & finally was eventually diagnosed with Elhers-Danlos Syndrome Type 3 Hypermobility in 2012.


The complications she faces are endless & the most appropriate & vital treatment is available in London. Aimee not only fights her disease every day but has been publicly campaigning against the policies of the Irish Government & the HSE.


This is the first official documentary filmed of Aimee's long & difficult journey that is life in Ireland with Elhers-Danlos Syndrome.


Kristin Means

In this video Kristin Means from the US explains her life with Ehlers-Danlos Syndrome

Cheyenne Love

I am Cheyenne and I am 21. In early 2012 I was diagnosed with Ehlers Danlos Syndrome type 3. (EDS). EDS is a rare genetic disorder effecting 1 in 15,000 people. Patients with EDS have a mutation in the genes that make up the collagen in their body. Collagen makes up your skin, joints, ligaments, tendons, blood vessels, and organs.


EDS type 3 is the hypermobile type of the disorder. With that all of the joints in my body dislocate on a daily basis. An EDS patient with type 3 can have on average 40 dislocations in one day.


To hold the joints in place I have to be in physical therapy for the rest of my life, wear braces to hold joints together, and eventually have surgery to fix the joints when they get beyond the point of repair. My skin also tears and bruises easily. It is also very stretchy just like my joints. With EDS type 3 there is a 25% chance that you can have issues with organs.


With that I have to have my heart monitored to check my Aorta because it is possible that it can separate from my heart or burst. EDS has changed my life in so many ways. I am starting this page that way I can share my journey, and the knowledge I gain along the way! Hopefully I can help another EDSer out there, and maybe make them feel like they aren't the only "Zebra" out there.


I hope to one day be an advocate for EDS and spread awareness by speaking to doctors, nurses, medical students, physical therapists, etc… and teach them about EDS that way patients can get the care they need! *PLEASE HELP SPREAD AWARENESS OF EHLERS DANLOS SYNDROME* ~ Love Chey


Please follow Cheyenne on facebook and twitter

EDS symptons

Do you suffer from any of these symptons? 

  • Fatigue
  • Chronic Pain
  • Hypermobile joints
  • Dislocations
  • Fast heart rate
  • Low blood pressure
  • Gastro-Intestinal problems
  • Stretchy skin
  • Delayed poor healing
  • Ruptures


If you have experienced any of the above symptoms then you may have Ehlers-Danlos Syndrome, ask your medical professional today for more information.


Because EDS is so rare you might have to push your medic! We did and finally got a diagnosis even though it took 3 years, at least we can now prepare for Annabelle's future.



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