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about_hibm:living_with_hibm [2008/03/15 05:47] – kamabout_hibm:living_with_hibm [2008/03/15 05:56] – kam
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 ===== Is there a treatment? ===== ===== Is there a treatment? =====
 Currently, there are no effective treatments for HIBM. Researchers at Hadassah, USC, UCLA, UCSD, Johns Hopkins University, Canada, NIH, and Japan are contributing towards finding an effective treatment. You may also wish to look at [[http://hibm.org/hrg/pages/welcome/developing-rx.php|Developing Rex]]  which describes how scientists develop treatment for a disease. With proper financial support and awareness we can speed up research significantly. Currently, there are no effective treatments for HIBM. Researchers at Hadassah, USC, UCLA, UCSD, Johns Hopkins University, Canada, NIH, and Japan are contributing towards finding an effective treatment. You may also wish to look at [[http://hibm.org/hrg/pages/welcome/developing-rx.php|Developing Rex]]  which describes how scientists develop treatment for a disease. With proper financial support and awareness we can speed up research significantly.
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 ===== Is There Hope for a Treatment Soon? ===== ===== Is There Hope for a Treatment Soon? =====
-Yes. Based on preliminary scientific findings, we believe it is less difficult to develop an intervention for HIBM than for many common myopathic conditions. This is because HIBM is associated with mutations on an enzyme that is expressed at low levels in skeletal muscle, but many other common muscle wasting conditions are caused by mutations on cellular structural proteins which are expressed at very high levels in muscle. +Yes. Based on preliminary scientific findings, we believe it is less difficult to develop an intervention for HIBM than for many common myopathic conditions. This is because HIBM is associated with mutations on an enzyme that is expressed at low levels in skeletal muscle, but many other common muscle wasting conditions are caused by mutations on cellular structural proteins which are expressed at very high levels in muscle. 
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 Current treatment theories revolve around the following basic concepts: Current treatment theories revolve around the following basic concepts:
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 It is not unlikely that treatments based on above concepts, which have failed to prove beneficial for other muscle wasting disorders, may prove beneficial for HIBM.\\ It is not unlikely that treatments based on above concepts, which have failed to prove beneficial for other muscle wasting disorders, may prove beneficial for HIBM.\\
  
 +For HIBM it is not about FINDING a cure, yet FUNDING a cure.
 With additional funding and awareness, we can speed up the research significantly. ARM offers scientific grants to research centers who are interested in working towards developing a treatment for HIBM. With additional funding and awareness, we can speed up the research significantly. ARM offers scientific grants to research centers who are interested in working towards developing a treatment for HIBM.
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 ===== Where do I get more information? ===== ===== Where do I get more information? =====
-You can find a lot of information here on our Web Site. If you would like to speak with a physician regarding HIBM, you may call (818) 789-1044.+You can find a lot of information here on our website. If you would like to speak with a physician regarding HIBM, you may call (818) 789-1044.
  
 This disorder was first called[[http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids=8453459&dopt=Citation|"Vacuolar Myopathy Sparing the Quadriceps" by Sadeh, et al, in a paper published in the medical journal, Brain, 1993 (116: pages 217-232)]]. You may obtain a copy of this paper from any medical library.  This disorder was first called[[http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids=8453459&dopt=Citation|"Vacuolar Myopathy Sparing the Quadriceps" by Sadeh, et al, in a paper published in the medical journal, Brain, 1993 (116: pages 217-232)]]. You may obtain a copy of this paper from any medical library.