A woman from Mylor who has been refused a potentially life-saving drug has turned to Crowdfunding in the hope of raising the £10,000 needed to unlock access to the drug.

Susan Hoyle has the rare medical condition Pansclerotic Scleroderma which has had a "catastrophic" effect on her body and led to multiple health problems and physical disfigurement. After being refused the drug Abatacept by NHS England, Susan says she is now in a "desperate race against time" to raise at least £10,000 needed to fund the treatment.

"I have been advised that without treatment if I continue to deteriorate at my current rate, I may only have a few years before I lose my life either primarily because of the disease itself or from secondary complications associated with it," said Susan.

"I have already had one life-threatening complication directly attributed to the disease and I am now at a critical point where I need to start treatment before it's too late and too much damage has been caused to my body."

The most dangerous part of the illness is that it causes fibrosis (hardening/inflammation) to develop and grow in the body, destroying skin, joints, muscles, nerves and blood vessels at both the surface and deep within to the bone causing deformity and contractures as it becomes more extensive.

"I have already lost most of the movement in my right leg as fibrosis has grown extensively throughout it, I am unable to bend my right knee because of deformity/contractures/nerve damage and have now lost almost half of the movement in my left leg," said Susan. "It has also caused major problems in my left arm resulting in three major surgeries so far to save the use of my hand and with it keep me able to use my crutches so I can still walk short distances and use my wheelchair.

"The level of pain that I am in, and associated with the condition, is horrific and without pain relief I am unable to function. The fibrosis is now affecting my pelvis and I have lost the ability to stand up straight and am now losing the ability to walk with my crutches the short distance I can and to use my wheelchair. I am now at risk of the disease becoming systemic and damaging my heart, lungs and other major organs."

Susan, of Parc Peneglos, is full of praise for her medical teams at the Royal Free Hospital London, which is the UK leading national specialist hospital for the treatment of this disease, and at the Royal Cornwall Hospital. "Without their expertise I wouldn’t be here now," she said.

"They have exhausted treatment available on the mainstream NHS but unfortunately my condition is aggressive and this treatment has been unable to control the progression of the disease and in my case without a chance at new treatment it is life-threatening.

"I am at present the most severe case being treated at the UK national specialist hospital but my condition is treatable with a new drug, Abatacept. In my case Abatacept has the potential to halt the spread of the disease and also improve my current level of mobility and independence and reduce the amount of pain I am in every day.

"However because it's not a mainstream NHS drug for my condition it is not automatically funded and for the last eight months my medical team nationally and locally and my MP Sarah Newton and I have been battling to get funding from NHS England which they have now denied because of policy.

"I am now in a desperate race to try and raise enough money through a Crowdfunding attempt to fund Abatacept treatment before I lose my life to the disease. I only stand a chance of this if I put out an appeal asking for help from the public."

Mrs Newton said: “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. 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.”

To support's Susan's fundraising appeal go to www.justgiving.com/crowdfunding/susan-hoyle.