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Jasons story
In 1982 I had a brain Aneurysm which at first put me in a wheelchair though through rehab over 13 years I became a personal fitness trainer worked in a health suites and other occupations.
Over a period of twenty years iron from the Aneurysm seeped into my vertebrae short circuiting (Jason's terminology here) the nerves in my neurological system causing my old health problems to become worse. A drug has been trialled in the US for my condition, I have had government approval for this trial that started in February 2014. For now the drug seems to have slowed the condition getting worse.
The drug Feriprox (Defeniprone) is to be used to help clear out the iron that is short circuiting me causing these problems;
Ataxia
Memory loss
Tinnitus
Hearing loss
Peristaltic tremors
Tremor in Both sides of body (almost totally under control via drugs)
Double vision
Headaches
Head and body shakes
A great deal of tiredness
Incontinence
I have found that eating healthy food, keeping rehydrated and keeping fit have improved my health considerably and I no longer suffer with the following;
Memory loss
Peristaltic tremors
A great deal of tiredness
Incontinence
I have learnt to make the best of the remaining circumstances involving my health and enjoy life much more with those problems out the way. When I found out I had SS there was only a white paper on the subject, with the help of my friend Amanda, we created the Charity The Silent Bleed
which I consider to be my life mission. Being in contact with physicians, specialists and sufferers worldwide, I can keep people updated as to how to cope with the disease, what research is being done and involve the public in raising funds for research as well as raising awareness throughout the world.