Weʼve raised £0 to stem cell transplantation, travel and accommodation
- Closed on Monday, 14th January 2019
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I`m 27year old man who has live just like a normal person..work.. home.. family but 8years ago everything change..
One day I have fall at work and could get up someone took me to the hospital where told me that I`m just stretched my muscles and everything will back to normal after few days,but wasn`t. I was fell more and more pain I could even stand straight. I want to GP who send me to a specialist. I was waiting a year to see neurology consultant which decidet that I have a Dystonia I was feel woried and happy at the time because I was thinking that someone will help me. Months past and my condition was getting worse only one thing change the amount of medication that I was taking. I have meet a different consultant neurology from the Belfast City Hospital he was try to treat me on all ways buy nothing help. He also done some extra blood tests and EMG tests Finelly in 2015 I get a diagnosis STIFF PERSON SYNDROME I was shock when i read that this is 1 in a milion disease. Very rare and incurable disease. I was try all treatment which are avilable to stop progress of SPS Intravenous immunoglobulin (IVIG) medication, physiotherapy but no help at all. At this time I`m not able to do day-to-day activities. I need help in everything get up,sit down dressing and undressing taking shower.... I`m not able to bend down. All my back and neck are very stiff. I`m just turning into a living statue.Every day I fell very strong spasms,cramps and pain in all my body. I have a huge problem with walking. Very often I have to use a wheelchair. I`m afraid that one day I will not stand on my legs and I will use a wheelchair for the rest of my live.
I have a 3 great kids twins age 5years and boy 8year because of my condition I can`t be a real dad for them. I hate myselfe when they ask me to play and I just can`t. This disease ruined my life complitly the only one and the last treatment which I really want to try is a Autologous Haematopoietic Stem Cell Transplantation which is very expensive but I know that this may help me.
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