A WEST MIDLANDS woman is determined to raise £10,000 to pay for the treatment that will alleviate her husband’s pain from a rare incurable skin disorder.
Scott Doyle was diagnosed with Pemphigus Vulgaris three years ago.
The condition, which causes painful ulcers to form all over his body, before bursting and scabbing over, cannot be cured but can be life threatening as it poses the risk of contracting septicaemia.
After the NHS refused to pay for the drug which could put his condition into remission, Scott’s wife Sheila Doyle has launched a fundraising campaign to purchase it privately.
“Scott has been suffering with Pemphigus Vulgaris, which is a rare skin blistering, autoimmune disease, for three years,” she told The Irish Post.
The effects of Scot's skin disorder“It causes erosions on his head, face and body, as well as lesions in his mouth and sometimes down his throat, which are excruciatingly painful and affect his sleeping and eating,” the 51-year-old, whose parents hail from counties Mayo and Roscommon, added.
With the condition gradually worsening and spreading all over his body, Scott, whose roots lie in Co. Carlow, is often in unbearable pain and unable to eat or sleep when in the clutches of a flare up of his condition.
But having visited various specialists in and around their hometown of Walsall, with little luck in finding a successful remedy to alleviate the currently incurable condition, the Doyles recently experienced a breakthrough.
They were referred to a PV specialist at Guys Hospital in London, who recommended that 46-year-old Scott apply for NHS funding for a course of Rituximab - a drug usually prescribed for rheumatoid arthritis which has also been found to put PV into long-term remission.
“None of the drugs we have tried to date have had any effect on Scott’s condition, so when we were given this advice we were delighted and made the funding application to the NHS straight away,” Sheila explained.
“But the NHS declined our application which, as you can imagine, has been devastating for us and has further affected Scott’s emotional state.”
But the Doyles, whose son Conor is 17, have now launched a fundraising page in the hope of reaching the £10,000 to secure the treatment.
“We are all, as a family, extremely worried about what the future holds for Scott, as his condition is getting progressively worse,” Sheila explained.
“We cannot see any light at the end of the tunnel and can only hope that we can raise the funds so we can pay for the treatment he urgently needs.”
She added: “This disease has taken away three years of Scott's life already; we can’t let it take any more and hope that there are people out there who are willing to support our campaign.”
More than £3,000 has already been raised by the family, who organised a fundraising bike ride from Birmingham to Bristol last month.
For further information, to support the cause or donate to the fundraising page visit www.youcaring.com/scottdoyle
See More: Pemphigus Vulgaris, Skin Disorder
