Personal Stories

29th April 2021

A transforming OT appointment

Erin Simons talks about the experience she had taking her seven year old son to an Occupational Therapist and the impact it has had on his school life

29th April 2021

The dark horse

The multi-award winning film maker and EDS sufferer based in the Midlands has recently embarked on a very personal insight into living life with the challenging and often mis-understood condition. In this article Ashleigh candidly shares her reasons for opening up, her latest film and some very exciting news...

28th April 2021

Sacral nerve stimulation therapy for bowel and bladder problems

Faye talks about how EDS affected her bowl and bladder and how Sacral nerve stimulation therapy has helped her manage it.

3rd February 2021

#TimeToTalk – Melanie

Lisa, our brilliant Black Country and South Staffordshire. Like so many other EDS patients, Melanie has had years of medical professional telling her that the condition is all in her head.

3rd February 2021

#TimeToTalk – Lisa

Lisa, our amazing West Yorkshire area coordinator, talks about her struggles with mental health, including suicide, paranoia, anxiety and OCD. Lisa is a caring, bubbly and loving person and this film is a wonderful example of the mask that many people put on to hide what they are going through.

3rd February 2021

#TimeToTalk – Grainne

Grainne, our wonderful Suffolk Area Coordinator, talks honestly and openly about her mental health. Amongst other things she discusses how her sexuality, medication and relationships affected her mental health.

17th November 2020

My journey with physiotherapy

Like most Zebra’s with EDS my journey to diagnosis and therefore treatments has been somewhat long and convoluted with extraordinary highs and lows.

8th September 2020

Living with pain

Pain is something I'm all too familiar with, I live in constant pain on a daily basis and I can't tell you what it's like to be pain free anymore.

8th September 2020

The pain barrier

It’s something that people take for granted each and every day, but I can’t remember the last time I felt comfortable. Whether I’m sitting in a chair, lying in my bed, standing or walking, comfort is a very elusive feeling, an unattainable goal that seems frivolous but is one of my greatest desires.