Approve Funding of Anakinra for Joseph Perrins diagnosed with rare Schnitzlers Syndrome
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My son is 24 years old. In 2015 he became unwell initially with pains in his feet leaving him in constant pain when he moved. Over the next 3 months he developed pain in other joints, stomach cramps, dizziness and eventually a chronic rash that would take over his body for days at a time. He saw various doctors specialising in arthritis with no apparent diagnosis after investigations. Bloods tests showed that he carried an IGG paraprotein with the potential to affect his bone marrow. In October 2015 he saw a consultant dermatologist at Good Hope Hospital Birmingham who called in a team of doctors specialising in rare diseases. He was put on various drugs over a period of 12 months and on 2 occasions saw 42 doctors in the hope of finding a diagnosis. They said he had HUVS a rare illness. The drugs he was given did not help. He developed an enlarged liver and the paraprotein was still there. In August 2016 we asked for a second opinion and in December 2016 he saw a team headed by Prof Clive Gratton at St Thomas London. Biopsies and bloods were taken and drugs were changed. Fast forward to one week ago and they have concluded that all the drugs they have tried have failed. They believe that he never had HUVS but another condition called Schnitzlers Syndrome with an IGG variant making it even rarer. Joes quality of life has been seriously affected. These flare ups are happening several times a day now and leave him exhausted, in pain and understandably he is very low in mood. He had to defer his plans to teach children with special needs when he became ill 2 1/2 years ago. He has now been accepted to start his PGCE in September because he wants and needs to but desperately needs approval to fund a drug called Anakinra. Research has shown that this drug works for Schnitzlers Syndrome and the doctors believe it can put what Joe has into remission. The doctors are trying to establish if this drug is licensed and can be funded on the NHS for this condition. All Joe wants is his life back. Please help him to do that by giving him approval to start this drug as soon as possible. Thank you.
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