080210xf's Blog

L'X fragile sera vaincu | Fragile X will be conquered

Anticipating Advances in Treatment

The National Fragile X Foundation Blog |

There is and has always been treatment for fragile X syndrome. Combinations of special education, therapy and medications have always existed for FXS. But, without exception, my advisors from our Scientific & Clinical Advisory Committee tell me that they are cautiously optimistic that new treatments, based on our latest understanding Fragile X, will eventually have a much more profound and efficacious impact than existing treatments. Estimates vary, but most of the research world would say that new drug treatments could begin to become widely available in the next five years – barring any unforeseen safety issues. That last statement is important. Many unanticipated problems in the study of drugs for other conditions have significantly delayed or even halted development of a new treatment. No one wants to be responsible for causing a new problem in the process of trying to improve an existing problem, and the government (Food and Drug Administration, FDA) simply won’t allow for studies to progress until safety has been carefully demonstrated. Whatever the case turns out to be I can’t emphasize enough that almost everyone in the Fragile X professional community is optimistic and enthusiastic about the future.

Many of you are wondering if these new treatments will be of benefit for all ages and, again, my advisors are optimistic. While it seems obvious that the earlier an individual begins to receive treatment the better, the mouse and fly models, along with early studies, do seem to indicate that individuals of all ages and all degrees of impairment may show improvement.

No magic pill is anticipated for the treatment of fragile X syndrome. Treatment(s) will consist of medications prescribed and monitored by physicians knowledgeable about and competent in the administration of these new drugs. The exact drug or combination of drugs will need to be determined. Dosages will need to be calculated and adjusted as needed. The development of possible side effects will need to be monitored. Much work is also needed so that therapists and educators will be able to take advantage of the improved learning capabilities, improved memory, reduced anxiety and more focused behavior that, we anticipate, will be present. This is where the National Fragile X Foundation comes in. We are listening closely to the community of families and professionals and working hard to lay the necessary groundwork.

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