Personal Stories

28th July 2021

You haven’t lost who you were

Ruth's successful career in performance music was lost due to her chronic EDS symptoms but a change of approach and an enviable positive outlook has enabled her to enjoy music in a different way

28th July 2021

Life is not merely surviving, we need meaning and purpose

Grahams story is one one of accepting that change had to come but also thinking outside the box to ensuring your life beyond work, is a fulfilling and rewarding one

28th July 2021

A better life through helping others

Cassandra talks about the challenge of being able to earn a decent living around fluctuating pain and energy levels, which often affect her mood and motivation. Through a journey of depression, she explains how she has arrived in a place where helping others develop and achieve their goals has helped her achieve a happier life

28th July 2021

Breath for no more than 99 Words

Liz talks about how a sudden decline in her health at 40 forced her to rethink how she worked and ultimately to the publication of her amazing book '99 Words', which features contributions from the inspirational people such as Nelson Mandela and Desmond Tutu.

23rd July 2021

Finding the right type of job

Marcia talks about how she has had to change the way she works and that it took time for her to discover the right type of job that was suitable for her condition, whilst staying within an industry she finds rewarding.

15th July 2021

A journey through work and volunteering

Anne talks about the challenges she has faced at work and about here journey into work and volunteering that is suitable for condition

14th July 2021

A condition close to my heart

Arun's talks about the motivations behind her fantastic fundraising and how EDS has touched her family

14th July 2021

My story – there is hope

Leonah's story about how her EDS led to her lowest point and how her diagnosis and succeeding in education has led to a brighter and happier future

1st July 2021

An exciting career but just not the one for me right now

Lauren's story about leaving a career she had always dreamed off was was difficult and sad but ultimately the change dramatically improved her physical and mental health

11th May 2021

It’s an EDS thing!

Lawrence tell us his story to diagnosis, management and beyond

11th May 2021

Following your dreams with wonky joints

Loki T-Rex tells us about his aspirations for the future and how clinging inspires him, whilst helping manage his EDS

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.