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The sky's the limit – friendship, fundraising and facing fears together: Jessie and Hayley's story

4 July 2023

When 26-year-old Hayley began experiencing double-vision, she could never have guessed that a year later it would lead to her being diagnosed with a muscle-wasting condition. As Hayley adjusts to a new diagnosis, her best friend and housemate Jessie is preparing to jump out of a plane to raise money for MDUK – and to raise awareness of conditions like Hayley’s.

Jessie and I met in our second year at Newcastle University. We were both studying geography and we’ve been best friends ever since.

After graduating, Hayley and Jessie moved into a shared house together in Newcastle. Hayley is now a Senior Demand Planner for a Dutch paint company and can often be found out for a run with the local running club.

Jessie works at the John Walton Muscular Dystrophy Research Centre, having joined the team at the end of 2022. After learning more about muscle-wasting conditions and the work MDUK carries out, Jessie has signed up for a charity skydive along with some of her colleagues to raise money for MDUK.

While Jessie’s work at the John Walton centre encouraged her to take on this fundraising challenge, her biggest motivation is a cause that’s much closer to home. In February of this year, Hayley learned that she had myasthenia gravis; a rare autoimmune condition that causes muscle weakness and excessive muscle fatigue.

Hayley’s 13-month diagnosis journey

In January 2022, Hayley began experiencing light-headedness and double-vision. Concerned, she made an appointment with the GP. “Based on my symptoms and a blood test, the GP diagnosed me with anaemia,” recalls Hayley, “But despite getting treatment, the double-vision persisted.

“The GP recommended I get my eyes tested and when the opticians noticed I had one eye sitting slightly higher than the other, they referred me to an ophthalmologist at the hospital. When they found nothing wrong with my vision, they discharged me with no concerns.

“I initially ignored the symptoms because I’d been told by the hospital there was nothing to worry about – I didn’t want to waste anyone’s time”

“While the double-vision had mostly disappeared by September, by December, it was back and worse than ever. I initially ignored the worsening symptoms because I’d been told by the hospital that there was nothing to worry about. I didn’t want to waste anyone’s time.”

Eventually, Hayley’s symptoms began to impact on her ability to work and drive. She decided to go to A&E, where they performed a CT scan to check for a brain tumour. “My CT scan came back clear, but the doctors noticed I’d developed a squint, a drooping eyelid, and I couldn’t move my eye to the left.

“I was told I could have a muscle-wasting condition called Ocular Myasthenia Gravis. They administered a blood test to look for a specific antibody and told me I’d have to wait for the results.”

Anxiously waiting for a formal diagnosis

“At this stage of my diagnosis, I remember feeling equally intrigued and scared,” recalls Hayley. “As soon as I got home, I went into a frenzy of researching ocular myasthenia gravis. Words like ‘incurable’, ‘neuromuscular’, ‘disability’, and ‘muscle-weakening’ kept popping up. It was overwhelming.

“While ocular myasthenia gravis doesn’t typically limit life expectancy or affect fertility (which was a massive relief), I learned that it can progress into generalised myasthenia gravis. Symptoms can include arm and leg weakness, trouble swallowing, and difficulty breathing.

“I started to think about the worst-case scenarios. I wondered whether I’d ever be able to run again, whether my boyfriend would become my carer one day, and what my life would be like if I ended up on a ventilator. I remember crying every night of what became a two month wait for a formal diagnosis.

“Perhaps these thoughts sound like an over-reaction to someone who hasn’t been in this situation, but I think it’s unavoidable. Your brain really does go to all these places, especially when you don’t know anything for certain yet.”

Learning about muscle-wasting conditions and life-changing neuromuscular research

Around the same time Hayley was waiting for a formal diagnosis, Jessie began working at the John Walton Muscular Dystrophy Research Centre.

“Before joining the John Walton centre,” Jessie says, “I knew very little about muscle-wasting conditions. I remember when Hayley first began experiencing symptoms over a year ago; it never crossed my mind it could be such a serious condition. At the time, I didn’t really know much about muscle-wasting conditions – I don’t think any of us did.

“I’ve learned so much from working at the centre. We have a five-point approach, focusing on clinical care, clinical research, diagnostics, basic research, and strategic partnerships; all of which have a big impact on the field of neuromuscular medicine. Everyone has a real passion for the work we do to support people living with neuromuscular conditions.

“Alongside what I’ve come across at work, I’ve also seen first-hand how Hayley’s life has been impacted by a muscle-wasting condition. That’s one of the reasons why the fundraising skydive is so important to me: I want to raise awareness of the condition and how it affects people, including those struggling with undiagnosed symptoms.”

Feelings of relief and denial when receiving a diagnosis

Thanks to her work, Jessie has a strong understanding of the diagnostic process of neuromuscular conditions – and what needs to change. “I still remember what a shock it was to see just how long it can take to diagnose someone with a condition like Hayley’s.”

Hayley couldn’t agree more. “Two months of not having a definitive diagnosis and trying to come to terms with a new condition without all the answers is very difficult,” Hayley says, “but I know some people can be waiting years for a diagnosis.”

I was relieved that I finally had an answer after 13 months, but a part of me still couldn’t believe it was true

Eventually, Hayley received a letter from the NHS confirming that she had myasthenia gravis. “When I read the letter, I was filled with feelings of relief, upset and denial. I was relieved that I finally had an answer after 13 months, but I still couldn’t believe it. How could I have felt 100% healthy just a year ago, and now have an incurable rare disease? It just didn’t make sense to me.”

Shortly after her diagnosis, Hayley was scheduled for a chest CT scan to assess her thymus gland. Although her scan showed no signs of cancer, it did reveal some hyperplasia (inflammation of the thymus) which would require surgery.

Raising money to support neuromuscular research – by leaping out of a plane!

In May 2023, Hayley underwent a keyhole VATS thymectomy at the Newcastle Freeman Hospital and is currently recovering from surgery. “We won’t know for another few months whether the removal of my thymus will improve my condition,” explains Hayley, “But I am hopeful of what the future may bring.”

As Hayley recuperates and continues to adapt to her new diagnosis, Jessie has thrown herself into fundraising to prepare for the upcoming charity skydive. “As a team who specialises in muscular dystrophy, we wanted to raise money for MDUK; a charity we often work alongside with.

“The skydive was our director, Volker Straub’s, idea and there’s now a number of staff from the centre taking part. Having never done anything like this, I’m a little nervous, but I’m looking forward to pushing myself outside of my comfort zone.

“The support we’ve received so far has been incredible and we’re so grateful for all the donations. We’re hoping to encourage other centres and organisations to start their own fundraising events. If we can raise a lot of money for MDUK, maybe others will be inspired to do the same.

“While a sky dive is an exciting way to raise money, we’re ultimately hoping to raise awareness of muscular dystrophy – and how symptoms of muscle-wasting conditions can present in different people.”

Raising awareness of the different symptoms of muscle-wasting conditions

This is a message that Hayley is equally passionate about. “I’d like more people to understand that with a condition like Myasthenia Gravis, it isn’t just about the first symptom you experience.

“People tend to associate my Myasthenia with double-vision, for example, because that was the first symptom I had. But the condition is so much more. People’s experiences of symptoms can differ massively, and can even change day-to-day.”

Although Hayley is determined to live her life to the fullest, a lot has changed for her. “Even in the short time I’ve had a diagnosis, I’ve learnt there will be constant hurdles I need to overcome. I’ve had to learn how to be patient, because having a health condition forces you to accept that you can’t get all the answers when you want them.

“However, I am no longer quite so anxious about my condition and I am feeling positive about the result of my surgery. I’m proud of how I have handled my diagnosis, and I’m proud of Jessie and the team at the John Walton centre for raising money and awareness for the cause – and, of course, for jumping out of a plane!”

If you’d like to support Jessie and the John Walton Muscular Dystrophy Research Centre team’s fundraising efforts, you can donate through their JustGiving page. Your donations will help fund vital neuromuscular research and provide invaluable support to people like Hayley, who are living with muscle-wasting conditions.

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