My story

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I was diagnosed in April 2014, after 1 year of test and examinations in the hospital. My first symptoms were: skin rash in 2013, then after a couple of weeks pain in my bones (my hip) and then later fever. In the beginning a couple of times in a month. After a while almoust every day. First, the thought it was an allergy, then a hernia in my back, then the disease of 'Paget', than bloodcancer, bone marrow cancer, but after many blood tests, scans (Nu...clair) and a bone and marrow biopsy they diagnosed with SchS. Finally the result. They give me Colchicine but it didn't work for me. They made a report for the Healty Care to get Kineret injections but Healty Care has refused the request. For the moment I have to take Cortizone. 24mg, 16mg works. Now I take 12mg and it doesn't work anymore. My Symptoms are back. I have a appointment next month in the hospital but I don't know what the future will bring. I have to go to the hospital every 4 months to get blood tests because the risk of cancer is 50%.
I have many friends who support me but I'm not someone who complains all the time. I'm looking to get Kineret funded because it is 960 Euros per month for 28 injections.