A former NHS physiotherapist from Mylor has launched a crowd funding campaign to raise £10,000 for a treatment that could potentially save her life.
Susy Hoyle needs a drug which NHS England have refused to fund partly due to the rarity of her progressive condition.
Around a decade ago, Susy says she was doing triathlons and working in the NHS as a physio.
"I got ill with a chest infection, my body couldn’t cope and I started getting multiple medical problems from there and was eventually diagnosed with Pansclerotic Scleroderma.”
Susy has now had to move back in with her parents in Mylor who are her full-time carers.
She has multiple symptoms and needs assistance with most tasks.
Funding for the one specialist drug that her medical team say should help her has been refused by NHS England.
NHS England says it has "real sympathy for people living with long-term conditions where treatment options may be limited".
"The NHS does fund some treatments for Scleroderma.
"However, Abatacept is unlicensed as a treatment for the condition and so is not routinely commissioned.”
Susy has set up an online fundraising page to raise the £10,000 needed to pay for a course of Abatacept herself.
“I’ve had fantastic care and support from RCHT and the Royal Free in London, they’ve been incredible but where I am now my future lies with NHS England and NHS England have denied funding for the one drug that could potentially safeguard my future and save my life.
"Abatacept is a new drug but in my case it has the potential to halt the progression of the disease that I’ve got.
"When you’ve got a chance and you can’t get to it it’s like mental torture, it’s soul destroying because you’re so close yet so far away and I can’t get there as yet."
Susy's local MP Sarah Newton is backing her campaign.
“I have been supporting Ms Hoyle since she first contacted me in July 2017 to raise her concerns about NHS England’s decision not to fund vital treatment, despite medical professionals recommending she receives it.
"She is an inspirational person who suffers from a rare progressive illness. The best experts in the country advised that she should be treated with a potentially life changing drug, Abatacept.
"This funding has been refused, both on application and appeal. This decision has greatly concerned her and her doctors.
"I am continuing to support Ms Hoyle and I am helping her raise her concerns about NHS England’s decision with the Parliamentary and Health Service Ombudsman.”
- You can find more information about Susy's story on her fundraising page.