A pensioner, from Wales, finally received his life-changing diagnosis on his wedding anniversary, after a six-year battle.
Stewart Ross, 76, from Monmouth, was diagnosed with inclusion body myositis, a progressive condition which causes muscle inflammation and results in muscle weakness and wasting, in 2015, after first noticing he was struggling to hold a golf club.
Over the six-year period, Stewart received many misdiagnoses and had to have unnecessary surgery on his back. After seeing a neurologist and having a muscle biopsy, the real diagnosis was revealed. Stewart now uses a wheelchair full-time, as he lost his lower leg due to an infection after breaking his kneecap in four places, following a fall.
Stewart, who has been married to his wife, Lesley, for 29 years, describes her as ‘being the best support I could ever have on this journey.’
Stewart said:
“I was diagnosed with Inclusion Body Myositis six years after originally noticing symptoms, as I was given an incorrect diagnosis. The news was delivered by letter, just three lines long, saying we’ll be in touch to have an appointment. That was it. I was shocked. I knew there was a problem, but to just receive a letter with no explanation, nothing. The only way I found out what the condition meant was through Muscular Dystrophy UK’s website.”
Stewart, originally from Ross-on-Wye, England, moved to Monmouth, South Wales, over seven years ago. He said:
“When I moved from England to Wales, I wasn’t given a neurologist or seen by anybody. I received a letter saying I would get an appointment when they had time. That was three years ago, and I’m still waiting.”
Stewart stars in a charity film by Muscular Dystrophy UK, the leading charity for more than 110,000 children and adults in the UK, living with one of over 60 muscle wasting conditions. Following the launch of the charity’s 10-year strategy, its vision is to create a world without limits for people with muscle wasting conditions.
Stewart Ross stars in ‘A world without limits: our ten year strategy’ video @ Muscular Dystrophy UK
Over the next decade, the charity will focus on four key areas:
- Transforming diagnosis – helping speed up and improve the accuracy of diagnosis
- No one faces their journey alone – reaching everyone with information and support at the point of their diagnosis and being there for them at every stage of their journey
- New treatments, universal support – helping accelerate the development of new treatments for every condition and quicker and easier access to specialist support when and where people need it
- Living your life to the full – campaigning for a more equal and accessible world and supporting more people to live independently with better physical and mental health
Stewart continued:
“If I’d received my diagnosis earlier, I would have lived differently. Instead, I was trying to treat a different condition because of the wrong diagnosis.”
Andy Fletcher, Chief Executive of Muscular Dystrophy UK, said:
“Discovering that you have a muscle wasting condition can be devastating. It can be lonely, isolating and frightening, facing a confusing and uncertain future. Getting the right support at the point of diagnosis is crucial for people like Stewart. We want to ensure that no one faces this journey alone.
“That’s why over the next decade, we are determined to develop a new diagnosis referral service, develop stronger connections with neuromuscular centres and clinics and significantly increase awareness, so more people can access support when they need it.”
Discover Muscular Dystrophy UK’s 10-year strategy: musculardystrophyuk.org/our-strategy.
