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about_hibm:living_with_hibm [2008/03/15 05:49] – kam | about_hibm:living_with_hibm [2008/03/15 15:45] – daniel | ||
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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:// | 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:// | ||
- | You can read more about this disorder at the [[http:// | ||
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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:// | 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:// | ||
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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. | ||