In Conversation With … Alisia O’Sullivan, ET patient and MPN Voice volunteer, who talks to Nona about her ET and being involved with MPN Voice. Alisia was diagnosed with ET 15 years ago, she tells Nona how her diagnosis came about, she was going to give blood and almost missed going and was very glad that she didn’t. She was called by her GP to say that some of the counts in her blood needed investigation, he thought they could be wrong as the platelets were very high but told her not to worry. Alisia then had further tests, including a bone marrow biopsy, which confirmed her diagnosis of ET. Wanting to know more about ET she searched the internet and came across the MPN Voice website, she then spoke to Tamara who advised her to research as much as she could about ET and to be as well informed as possible to ensure she got the best care and to take control and be a ‘patient expert’. Alisia said that this inspired her to become more involved with MPN Voice to help and support other MPN patients, after attending a forum in London she volunteered to help and is very active in sourcing corporate funding, writing patient information booklets and information on the website. Alisia then talks about her symptoms and medication, changing from Hydroxycarbamide, due to intolerance, to Pegylated Interferon which she tolerates very well.
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