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about_hibm:living_with_hibm [2008/03/15 05:49] – kamabout_hibm:living_with_hibm [2014/05/04 17:38] – external edit 127.0.0.1
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 HIBM (Hereditary Inclusion Body Myopathies) are a group of genetic disorders , which are uncommon in the general world population. HIBM causes progressive muscle wasting and weakness that can lead to severe disability. The autosomal recessive form([[http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=600737|IBM2]] or [[http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=605820|DMRV]]) is more common in people with a Middle Eastern, Jewish or Japanese heritage, but patients can be found in every community. HIBM has been identified in other minorities throughout the world. Patients of Asian (Japanese, Korean, Chinese and others), European, and South American origin, as well as Muslim patients in the Middle Eastern, Palestinian, and Iranian origin, have been identified. In Japan and many East Asian countries, this disorder is known as Distal Myopathy with Rimmed Vacuoles (DMRV). HIBM (Hereditary Inclusion Body Myopathies) are a group of genetic disorders , which are uncommon in the general world population. HIBM causes progressive muscle wasting and weakness that can lead to severe disability. The autosomal recessive form([[http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=600737|IBM2]] or [[http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=605820|DMRV]]) is more common in people with a Middle Eastern, Jewish or Japanese heritage, but patients can be found in every community. HIBM has been identified in other minorities throughout the world. Patients of Asian (Japanese, Korean, Chinese and others), European, and South American origin, as well as Muslim patients in the Middle Eastern, Palestinian, and Iranian origin, have been identified. In Japan and many East Asian countries, this disorder is known as Distal Myopathy with Rimmed Vacuoles (DMRV).
  
-You can read more about this disorder at the [[http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=600737|OMIM]]  database.  
  
  
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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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 If you are affected with another disorder, such as Multiple Sclerosis (MS), we recommend [[http://rarediseases.org/search/orglist.html|database at national organization of rare diseases]] for an organization that is focused on your disease. If you are affected with a more common disease such as MS, there is probably more than one organization to offer help and research funding. If you are affected with another disorder, such as Multiple Sclerosis (MS), we recommend [[http://rarediseases.org/search/orglist.html|database at national organization of rare diseases]] for an organization that is focused on your disease. If you are affected with a more common disease such as MS, there is probably more than one organization to offer help and research funding.
  
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