Rare diseases- breaking down the barriers User Group
rare diseases-are we alone?
About This Group:

Poviding opportunity to discuss and create awareness of the issues faced by rare condition sufferers and their families. Rare diseases can often leave patients and their loved ones feeling isolated, yet the issues we face are common. By speaking with one voice, we can together evoke change. Your story is unique, and we invite you to join our group and share your experiences.

Founded by porkia on October 2, 2009
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rare diseases-are we alone?

Every story is unique, but as rare disease sufferers, we share common challenges. Your story could inspire others to not feel alone, create awareness of the issues faced by patients of rare conditions and their loved ones, and evoke change. What challenges have you faced in finding diagnosis/care for yourself or a loved one? What more needs to be done in your opinion to support children and adults facing rare conditions, and have you learned something you feel should be shared in order to help others? Your voice is important, your story unique. We invite you to join us as we strive to bring people together on these issues, evoke discussion and together, voice the needs of individuals bravely facing rare conditions. Thankyou for sharing.
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585414_tn?1288944902
Really important question. I can say for myself that after having made a full recovery from schizoaffective disorder with glycine a novel antipsychotic agent in Phase II FDA study (the antipsychotic agent was tried because I have advanced tardive dyskinesia and could not tolerate Clozaril) it was found that I had a secondary series of psychosis and dysmentia that were neurological. Upon further discussion, it was understood that I met the criteria for the misunderstood neurological disabilities under clinical study, tardive psychosis, tardive dysphrenia and tardive dysmentia. After advocating for treatment for them, a variety of helpful treatments were found and so far the anti-convulsant Vimpat (remember this is its first usage on tardive dystonia alone outside of the animal model so the question as to whether it wil help others is still tentative but quite promising) has shown the best results. This may be published in a case study and I have conducted testimony in person and through letter writing and email (which I have recieved correspondence back from many noted provider agencies in support) that new schizophrenia research be prioritized into new classes of antipsychotics such as the NMDA receptor modulates of which glycine is one(which will not cause tardive dyskinesia) be prioritized. And I continue to advocate for tardive psychosis, tardive dysphrenia and tardive dysmentia to be identified, treated and prevented. As these neurological disabilities are severe and irreversible physical recovery has been slow and right now aside from an excercise walk a day basically I am homebound and network on line and due to dysphasia communicate with a TTY but I continue to advocate to obtain the accomodations and supports and services  I require to gradually go back to the outside world and continue to remain a part of the community which is essential. Everything I posted here is under standard clinical study and will be clinically confirmed.
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