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I am Rianne Boumans, 37 years old.
Until 2011 life was easy. Youth, high school, as a young adult, really, everything was great.
In 2011 I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). This diagnosis was made in response to some strange neurological complaints, the unofficial diagnosis was quickly made. The official diagnosis took another year, which was in March 2012.
Nowadays the symptoms I have to deal with are stiffness, cramps, spasms, constant nerve pain, tingling in hands, the lefthand is slacker than the righthand. Anyway, everything is a lot slacker than before, my internal thermostat is broken, difficult to fall asleep and sleep badly, bad walking, bladder and intestinal problems. In summary it is an all-embracing fatigue feeling. Fortunately I have no complaints cognitively.
Last year my condition declined all the way. New research in a national academic hospital established a new diagnosis: Secondary Progressive (SPMS). This is the next stage in the Multiple Sclerosis (MS) disease. Although there will be no relapses, my condition will deteriorate gradually. The rate at which the complaints become more severe and I physically deteriorate and become needy are coming apparent increasingly.
When I am doing nothing, I see myself in a nursing home within 5-10 years. I do not want that, I cannot and I will not!
The physical damage so far will not cure with the HSCT, but I would like to live the live what is left on this moment, with a social and business life and to keep my independence. Therefore I want to try a stem cell transplantation (HSCT). I see HSCT as the frontrunner cure at this moment. Even if it only stops the disease for 5 years, I can look forward to new medical developments in the future. I go for it! Here I need your help, I cannot do this on my own …
The costs for stem cell therapy are very high.
Worldwide, several clinics carry out this HSCT treatment for MS patients already. Despite the good results and research abroad, the costs for this cure are still not reimbursed in the Netherlands. A clinic in Moscow has reserved a place for me on June 25 this year. Approximately € 60,000 is needed to cover all costs, for the preliminary studies, stem cell therapy itself, the Moscow to-and-fro trip and the home care afterwards. This all is why I started a crowdfunding, in the hope to be able to go to Russia on 25 June and to gain a future with better prospects.