WHEN Alexandra Gardyne was diagnosed with Facioscapulahumeral muscular dystrophy (FSHD) she felt “stuck”.
Just 21 years old, she had been experiencing difficulty walking since her late teens.
Alexandra has lived with significant facial paralysis since she was very young and knew she had a winged scapula, where the shoulder blade extends unusually from the back and can be a sign of FSHD, but didn’t let them hold her back, enjoying a normal childhood playing sports.
She said: “I started to notice a difficulty and just being a bit slower.
“I was running and not being able to run fast enough and feeling like I was dragging my body – a very weird sensation.”
FSHD is a genetic muscle-wasting condition that causes muscles to weaken and waste over time, leading to increasing disability. Between 2,000-2,500 people in the UK have FSHD and it is the third most common muscular dystrophy.
Now Alexandra is fundraising to raise awareness and boost research into the condition through Alexandra’s Family Fund and Muscular Dystrophy UK. She will be jumping out of a plane for a sky dive in March and hosting a charity ball at the Hilton Grosvenor Hotel in April.
When she was diagnosed, Alexandra felt “a bit lost and empty for a while. I sort of hung on to the feeling of being stuck.”
She found acceptance of her condition by “being brutally honest” with herself.
She said: “It was terrifying to go through, that being brutally honest with myself.
“So just being brutally honest and not hiding anything from myself and learning and finding a way to apply my skillset so I didn’t feel like I had lost everything.”
Despite living with the progressive condition, the single mum-of-one remains positive, citing her 7-year-old son as her inspiration.
She said: “My son is definitely a driving force for me to continue being the best version of what I can be with the condition that I have.
“I have to show him that regardless of how difficult it is and how upsetting at times it can be, you go on.”
Alexandra is motivated by helping others to understand FSHD, for those diagnosed and their families, and will be starting a support group in April.
She said: “[I want people to know] that no matter what you are going through you can always help somebody else. That’s my second driving force, I’m doing something that’s helpful for me but also that is going to help other people.
“[Having a support group] would have benefited my mental health hugely. I would have felt in control.”
Alexandra, who now lives in Gorebridge, credits a close knit circle of female friends for helping her stay upbeat and encouraging her charity work.
As her physical strength waned, Alexandra was forced to give up her work as a community support worker but is energised by her fundraising.
She said: “It is my hope that I can support others.”
To donate to Alexandra’s Family Fund or to sponsor or donate prizes to the charity ball email, email@example.com