Ataxia Awareness for Research
This petition had 1,331 supporters
Ataxia is a rare neuro-muscular degenerative condition that does not stop at a stage but continues to increase. Ataxia mainly affects limbs, movements and slowly it captures the whole body and becomes totally dependent. The other problems associated with the progress of ataxia are slurred speech, involuntary eye movements, vision problem, swallowing problems, cardiomyopathy, diabetes; etc Ataxia patients are mentally sound but will become physically dependent. The sufferer clearly knows and experiences the darkening future but cannot do anything because there is no cure of ataxia. This is extremely miserable situation which leads most to sufferer in deep frustration, anxiety and depression. So it is very necessary to take steps to bring them out of this frustration and depression.
Ataxia is not a common disease and the society is not well aware about ataxia. Therefore, ataxia patients are often misguided. Ataxia patients have formed self help groups and gathered many patients through Internet. These self help groups tried to spread awareness through different camps and put patient views in international conferences. But these efforts are not enough. We need support from society.
There are different types of ataxia. Out of which Freidreich’s Ataxia (FA), Cerebellar Ataxia (CA), Spinocerebellar Ataxia (SCA) are some most common . The type of ataxia can be known through DNA test or it can be acquired (after birth).
The condition of ataxia can be diagnosed by clumsiness, loss of coordination in arms or legs, unsteady or swaying gait, slurred speech, jerky limb movements. All these are clinical symptoms by which a doctor can say that person has ataxia. But these symptoms are not enough to know the type of ataxia.
We are trying so hard so others will have better options that are diagnosed later. So that you (it does wait to show signs sometimes), our children or grandchildren do not have to suffer as much or perhaps not at all! All we are asking for here is your signature to allow the research to be funded by the right source(s).
Unfortunately, we are finding out that somehow via (accidents [head injury], stroke, brain tumors and other head trauma affecting Cerebellum) also sometimes Ataxia appears. Although obviously non-genetic the exact same symptoms occur and some are even progressive.
If you need more information or wish to make a personal contribution please visit The National Ataxia Foundation here:(NAF) http://www.ataxia.org/
I ask on behalf of many of my Ataxian friends!
Thank you in advance, we appreciate your concern and time!
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