JUMP TO CONTENT

Experiencing Ehlers-Danlos syndrome at work

We're proud to share a message written by Rachel, a member of our very own Disability and Carers Network. At EDF, our employee networks are integral to our inclusive culture, they are open to all and support our people whilst advocating for positive change.


I have Ehlers-Danlos syndrome (EDS). My body has a genetic defect which affects the way that it produces collagen; this affects my connective tissues and therefore most parts of my body. EDS is not a well-known condition and it is often missed in diagnosis. As a child I was just assumed to be a ‘weedy’ kid who was no good at sport and couldn’t run very well. The truth was, due to my weak tendons and ligaments, my body was working extra hard to keep my joints in place.

I frequently injured myself from sprains to a spectacular elbow snap in a failed attempt to join the schools gymnastics club at age 11! I was diagnosed in my 30s after becoming very unwell in pregnancy. Hormones during pregnancy cause connective tissues to loosen up even further. By the point I was diagnosed, I had difficulty walking as my hip or kneecap would start to dislocate as I tried to walk and life was incredibly painful as a result. Connective tissue isn’t just limited to joints however and I also had problems with my eyes when tissues became fragile in them as well.

My EDS diagnosis journey

By the time I was diagnosed, I had almost lost my son during pregnancy due to complications associated with EDS which put me in hospital. I had an emergency referral to a Rheumatologist after previously seeing one several times about long term joint pain without a diagnosis beyond a vitamin D deficiency. At the time, I was in my mid-thirties and had worked for EDF for several years. I deteriorated a lot during pregnancy and there came a point when the company very kindly suggested that it would be a good idea to work part time and wind down to maternity leave early. I had a lot of support from the company at this time.

After pregnancy, I went through a lot of physiotherapy and hard work to get to a point where I could walk, at first with aids and after a couple of years, finally without an aid. By that time, I had some major surgery due to my condition and discovered that, due to the wear and tear of joints, I have Osteoarthritis in my lower spine and my neck, along with degenerative disk disease. I am currently trying to delay fusion surgery in my spine for as long as possible.

EDF has been very supportive throughout my journey

I have had support through occupational health and the ability to use the benefits scheme has meant that I can access Osteopathic treatment as well - this has been invaluable in my rehab. My desk has been set up to support my needs – I develop tendonitis easily and modified display screen equipment reduces that risk immensely. Flexibility with my job, allowing me to work remotely on a regular basis means I am able to conserve energy and heal -this is very important when your hips, knee and ankle tendons are all inflamed and damaged. Even the ability to access gym memberships through the flex benefits package meant that from the early days of rehab I could access a pool close to work which helped to build strength day by day.

We were also able to make sensible adjustments to my approach to work. Whilst my natural environment was site based work, I was able to focus on our project office activities during the long rehab and still give value to the company. This took into account my physical ability as well as accepting my intellectual contribution. My experience has been one of a long term health condition which was undiagnosed and deteriorated to a significant degree before diagnosis. I have been incredibly lucky to have support from my employer which has enabled me to get some considerable success with rehabilitation. I have worked in different industries during my career and I am very aware that not all employers are as progressive as EDF.

The support that I have experienced has been incredibly positive and has given me the resources I needed to regain my independence. Being able to work has had an incredibly positive affect on me, it has given me a feeling of worth when coping with the emotional impact of coping with illness and it has helped me to remain intellectually engaged. That engagement is incredibly important and extends to all of us who encounter disability and those of us who have diagnoses which are not as positive as mine.

Posted byAlicia Waddington-Azambuja
List #1

Related articles

Meet the team: Rachael

Teaser

Life at EDF

Content Type

Employee Stories

Publish date

24/07/25

Summary

Meet Rachael – Customers and Corporate Business Information Security Officer Rachael joined EDF with a wealth of experience in intelligence and cyber security, drawn by the company’

Teaser

Read more
Meet the team: Donald

Teaser

Life at EDF

Content Type

Employee Stories

Publish date

24/07/25

Summary

Meet Donald, a dedicated and inspiring professional shaping the future of cyber security at EDF. From joining as a Design Engineer at Torness power station in Scotland to his current role as a

Teaser

Read more
Meet the team: Ee Jane

Teaser

Nuclear & Engineering Careers

Content Type

Employee Stories

Publish date

21/07/25

Summary

Want to build a career following whatever takes your interest, developing new skills along the way? That’s been Ee Jane’s story, since she joined EDF on the Science and Engineering graduate scheme

Teaser

Read more
Meet the team: Aoxue

Teaser

Nuclear & Engineering Careers

Content Type

Employee Stories

Publish date

11/07/25

Summary

Aoxue joined EDF in 2022 after finishing university and now works in the Supply Chain team as a Data Analyst. Read time: 3 mins What’s the journey been like going fro

Teaser

Read more
Honouring Our Forces Family at EDF

Teaser

Life at EDF

Content Type

Employee Stories

Publish date

26/06/25

Summary

As Armed Forces Month draws to a close, we take the opportunity to reflect on the significance of June for veterans, reservists and the wider military community and to celebrate the contributi

Teaser

Read more
International Women in Engineering Day 2025

Teaser

Life at EDF

Content Type

Employee Stories

Publish date

24/06/25

Summary

On International Women in Engineering Day, we’re celebrating the talented women across EDF who are helping to build a better, more secure energy future for Britain. This year’s theme ‘Together

Teaser

Read more
LGBTQ+ Supporters Network highly commended at the DIVA Awards!

Teaser

Life at EDF

Content Type

Employee Stories

Publish date

03/06/25

Summary

We were Highly Commended for the LGBTQIA Network of the Year DIVA Award on Friday 25 May.Every year DIVA, the world’s leading magazine for LGBTQIA women and non-binary people, celebrates the a

Teaser

Read more
What does this year's International Women's Day theme, 'Accelerate Action' mean to you?

Teaser

Life at EDF

Content Type

Employee Stories

Publish date

05/03/25

Summary

At EDF we're marking International Women's Day 2025 by speaking to amazing women from across the business about what this year’s theme, Accelerate Action, means to them. L

Teaser

Read more
Meet the team: Hannah

Teaser

Nuclear & Engineering Careers

Content Type

Employee Stories

Publish date

07/02/25

Summary

Hannah began her career in EDF's nuclear family with an industrial placement in Nuclear Operations, and she now leads the chemistry team for pre-ops at Hinkley Point C. Read on to find out how E

Teaser

Read more
Diverse representation at EDF

Teaser

Life at EDF

Content Type

Articles

Publish date

29/01/25

Summary

We're committed to fostering equity, diversity and inclusion within our workforce, and we're proud to share our progress.In 2021, we took significant steps by monitoring the diversity of our lea

Teaser

Read more
Search

Browse Jobs