Zoë Myers, 29, from Barnet, waited 10 years to receive her diagnosis of facioscapulohumeral muscular dystrophy (FSHD), a rare muscle wasting condition. She is now determined to ensure no one else faces the same difficulties she endured.
Symptoms Began in Late Teens
Myers first noticed symptoms when she was around 18 or 19 years old. She could not raise her arms properly and her shoulder blade was visibly elevated. The pain became more pronounced when she moved to Japan in 2019 to teach children. Even writing on a whiteboard was painful due to holding her arm up for long periods.
While in Japan, the Covid-19 pandemic hit, leaving her isolated. She saw a chiropractor who helped with stretching and exercise, but the language barrier was challenging. She did not see friends and family for two and a half years, and both her mental and physical health deteriorated. She returned to London in late 2022.
Challenges Before Diagnosis
Back in the UK, Myers was under the care of the orthopaedic department at The Whittington Hospital, where she was repeatedly told she had severe scapular dyskinesia. She refused to believe it, feeling that doctors were making it up as they went. She said, "I guess you know your own body. It was such a frustrating period."
Before her diagnosis, Myers also faced unfairness in the workplace. She now works in a more supportive environment with adjustments in place. She highlighted the economic injustice associated with disability, noting that many people with invisible disabilities are dismissed by employers and the public.
Diagnosis After a Decade
Myers was referred to the National Hospital for Neurology and Neurosurgery at Queen Square. After genetic testing, she received an official diagnosis of FSHD in November 2024. The turning point came when a neurophysiologist at The Whittington immediately suspected FSHD after nerve conduction tests. She said, "It was surreal that he knew that quickly, when I'd been searching for answers for nearly a decade."
Fundraising and Awareness
To raise money and awareness, Myers held a Community Fundraising Picnic to mark World FSHD Day on Saturday, June 20. More than 30 people attended, raising £1,000 for Muscular Dystrophy UK, the leading charity for over 110,000 children and adults in the UK living with one of more than 60 muscle wasting and weakening conditions.
Myers aims to change the fact that she had never heard of FSHD and has never met anyone else with the condition. She wants to raise awareness so others can get diagnosed sooner.
