Noak Hill woman raises funds and awareness for 'hellish' rare disease
- Credit: Elloise Charles
A Noak Hill woman is raising money and awareness for a rare and highly misdiagnosed disease with devastating effects.
Elloise Charles' dad Alan spent two years wondering what was causing his health to decline.
After a series of misdiagnoses, he was finally told he had, a rare and progressive condition, progressive supranuclear palsy (PSP), that can cause problems with balance, movement, vision, speech and swallowing.
In the UK, around 4,000 people are diagnosed with PSP, but the number of sufferers is likely to be higher due to it often being misdiagnosed as other diseases such as Parkinson’s, says charity the PSP Association.
Elloise, 28, who works in financial services, is now raising money for the PSP Association to raise awareness and fund research by running a half marathon in Hyde Park.
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Talking about the disease and its impact on daily life, she said: "It presents itself in the most evil ways, losing all motor and cognitive function over the course of a few years.
"The ability to speak, walk and eat all become near enough impossible. I will never have the words to explain how heartbreaking it is to see someone you love so much having their life taken away bit by bit by this hellish disease.
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"Very few friends and family know about my dad's disease and what him and my mum are living through day by day. We haven’t shared the reality of our lives and the daily grieving and energy which is absorbed by this disease. "
She added that a lot of what the family is going through is too devastating to talk about but that they're doing their best to spread awareness.
"I want to create as much awareness of the disease as I can. I can’t sit back and just watch this disease take over without trying to do at least something."
There is no cure and no treatment. The PSP Association says awareness is very low and research is poorly-funded.
Due to the lack of research and information available, each step and new symptom of this disease is experienced through living with it.
To help Elloise, visit her fundraising page: https://www.justgiving.com/fundraising/Elloise-Charles