Passionate 20-Year-Old Becomes Charity Trustee

A young woman is about to become a trustee of the foundation of a rare genetic disorder after the impact of the condition on her family.

Emily Bell is preparing to join the UK HSP Support Group at just 20-years-old and hopes to oversee funding for the group.

Hereditary Spastic Paraplegia (HSP) is a rare genetic disorder caused by one or more gene mutations. It causes affected individuals to experience mobility issues and progressive weakness of the muscles, as well as potentially impacting the functioning of the bladder and the reproductive system.

“Though I do not suffer myself, my grandad and cousin both have the condition," Emily tells Smiley News. “There is the potential that I could be a carrier of the condition, meaning that my future children may suffer with it and I will be in a position where I will need the support of this group. I think the work that they do is fantastic.”

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According to the NHS, anywhere between 1 in 11,000 people to 1 in 77,000 people in the UK are living with HSP. Emily’s grandad has suffered with mobility issues for all of her lifetime and she has watched his physicality decline over the years.

Her 15-year-old cousin had an operation on his feet at a young age in an attempt to relax his muscles, and Emily has witnessed him being teased for wearing hospital shoes, and left out of football games because he's "not good enough".

“It breaks my heart to see members of the public be cruel to two of my very close family members simply because of the issues caused by a rare genetic disorder," says Emily. "It only makes the condition harder for the individual and those around them to live with."

The HSP Support Group was originally founded as a 'self-help' group by Stephanie Wyatt in 1989, to support both her husband and son who were affected by the disorder. Before that, there was a significant absence of support for people with the condition to turn to for advice or comfort.

To date, the community has over 400 active members and what was once just a 'self-help' group, is now a UK registered charity with the financial means to provide grants to individuals affected by HSP. It can also donate to research groups, as the current medical understanding of HSP is still fairly limited.

Several years back Emily’s own mum and aunt had been invited to participate in NHS research, to learn more about the rare disorder and how to treat it. But the research was ultimately abandoned due to a lack of NHS funding, something that has made Emily and her family feel that the condition was not deemed worthy.

Joining the group as a trustee has given Emily the optimism that she can oversee positive change, for her family and others.

“Ultimately, I want to be part of a group that has the power to make a change to the lives of people with HSP," she says. "Whether this is through fundraising activities, spreading awareness, or being part of research and funding, the group is clearly close to my heart.”

Inspired to Act?

SUPPORT: Find out how you can support the HSP group on their website.

DONATE: Help the charity go further with its mission by donating.

GET IN TOUCH: Do you know a young person who is making a difference through charity work? Get in touch by emailing [email protected].