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Iranian Jewish Life in Los Angeles: Past and Present

Saba Soomekh, Author

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The Neuromuscular Disease Foundation: Genetics

What causes the spread of HIBM?

This disease is a recessive genetic disease. This means if an individual is a carrier and has a baby with someone who is not a carrier, there is no risk of that child having the disease; however, the child can be a carrier. The only way to prevent the disease from spreading is for individuals to be aware of their carrier status. This disease is passed on when two carriers produce children who will have the disease. With advanced technology, there are ways to prevent this. Parents who are both carriers can marry and have children, but they must go through embryo testing procedures in order to implant only the embryos that are not affected. If both parents are carriers, for each of their children, there is a high probability -- 25% -- that they will be affected by HIBM. Furthermore, there is a 50% chance that each child will be a carrier like his or her parents. Each child has only a 25% chance of not carrying the HIBM mutation at all.
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