Sheffield ballet dancer appeals for funds for ‘life changing’ surgery

Jessica Clyde, aged 32, had been a professional ballet dancer in London since she left her home in Sheffield to pursue her dream career.

But through the majority of her adult life she has been plagued by undiagnosed symptoms – unexplained falls and dizziness, spontaneous bleeding in her limbs and dislocations without cause.

Eventually her ill health ended her dance career.

She said: “As a young healthy looking woman, I struggled to be taken seriously by doctors. With no answers I had no choice but to soldier on, but over time the difficulties I was experiencing continued to progress in severity.”

But as Jessica soldiered through her symptoms undiagnosed, her health deteriorated and she lost her career overnight. A misdiagnosed shingles rash spread to her brain triggering encephalitis - inflammation of the brain.

She said “I just remember having the worst pain ever in my head. I looked in the mirror and like one side of my face dropped. I thought I was imagining it because all the doctors kept saying that I’m fine. I thought I will lie down for a minute. And then I couldn’t get back up again.

“I lost normal function down the right side of my body, and it took over a year off work to fully rehab and regain strength in my limbs again. I was always rehabbing with the hope that I would go back because I loved my job. I hadn’t been given any concrete diagnosis at this point so realistically, there was nothing stopping me.”

But as Jessica continued to struggle with health issues, experiencing difficulties over 10 years, she was eventually diagnosed with a rare systemic genetic connective tissue disorder called Ehlers-Danlos Syndrome.

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue affecting skin, tendons, ligaments, blood vessels, internal organs and bones.

While Jessica has learnt to manage many of the difficulties after the diagnosis, the disorder has affected the cartilage in her rib cage causing a rare complex form of Pectus excavatum – causing rigidity of the chest wall.

This has deteriorated significantly over the past few years, causing her to develop chronic chest and back pain, fatigue and dizziness, repeat episodes of Costochondritis and asthma.

She said: “I have gone from having the fitness of an elite athlete to being unable to do anything cardiovascular. Every respiratory virus circulating floors me. It constantly feels like someone is sitting on my chest restricting my breathing. It stops me being able to fully enjoy my life. Being forced to give up dance and exercise and living with daily pain is a big hit for your mental health.”

After seeking multiple opinions, both NHS and private, Jessica was told she should undergo a major open chest surgery called the Ravitch Procedure which involves removing the excess cartilage and manoeuvring her chest back into place.

Unfortunately, while NHS offers the surgery in Scotland, Wales and Northern Ireland, NHS England has currently decommissioned funding for it.

Jessica said: “It’s just incredibly unfortunate that the funding for it has been pulled in England. And that’s what’s so frustrating because it doesn’t make much sense that if I was living in another postcode in another part of the United Kingdom I could have done the NHS surgery without any problem. It’s baffling.”

As a review of funding by NHS commissioners in the new financial year has been pushed back yet again, Jessica has been left with no choice but to raise the £16,000 to fund the procedure privately herself.

She has set up a Go Fund Me page and has already raised over £5,000.

She said: “I had to shield during the pandemic and fell really ill when I contracted covid on my return to work. I was out for three months and it’s taken nearly a year to fully recover. I’ve had to withdraw from university due to my health, and I can’t return until the surgery is completed as I can’t take that much time out of the course. I feel I can’t move forward with my life.

“I don’t come from a wealthy family. My own savings have already been drained by private medical consultations and treatment and my ability to work full time over the past few years due to my health has been incredibly inconsistent. Health insurance is not available to me as I have a pre-existing condition, so I’ve been left with the last resort option of fundraising. It’s scary to be left in a position where you feel powerless to help yourself.

“At the moment, I really do feel my life is on hold. For all my adult life I struggled with undiagnosed physical symptoms which had a huge impact on my confidence and self-esteem. Finally getting the right diagnosis should have been such a positive step forward but I can’t help but feel so angry and frustrated at the unfairness of the situation.

“You want to feel confident you’re in the best hands and will be helped through the NHS. Unfortunately, that support and safety net has disappeared for me when I’m most in need. It takes a huge emotional toll being put under such stress and uncertainty, particularly when stress management is already such an important part of dealing with a chronic health condition. It’s compromising my physical and mental health further.

“It’s been a big deal for me to share this publicly. Some friends and colleagues have been completely unaware I’m living with a condition stopping me from living life to the full.

“My story is a very complicated one and it’s been hard to know how much to share publicly without re-traumatizing myself. To hit nearly a third of the target goal before Christmas was pretty amazing, I’m so grateful for all the support I’ve received, but there is still a long way to go. All I can do is try and spread awareness as far as I can.”

Visit Go Fund Me to donate.