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My daughter Katie was diagnosed with Myasthenia Gravis 3 years ago. She has a particularly severe version of this disease that affects her immune system and the way her muscles work. Over the years, in three different hospitals, we have tried a number of treatments and operations that have up to now not worked. We are just coming to the end of a years trial of a drug that has had no effect, In 2019 we are hopeful that a drug called Rituximab might help and infusions of this drug start in January.
Meanwhile, the only way that we can keep Katie well is to swap out her plasma. This means that on three days each week, Katie is hooked up to a machine, via tubes and taps that are implanted into her body and we remove as much plasma as possible replacing it with plasma from donors. This treatment carried out by the fantastic plasmapheresis team at the John Radcliffe Hospital in Oxford.
Myware, is the new name for the Myasthenia Gravis Association. They are a small charity doing all they can to research cures and care for those with the disease. In 2019 we aim to raise as much as possible so this great charity might one day be able to help our Katie and others like her. Thanks for reading please donate what you can to our cause