The Neuromuscular Disease Foundation: Treatments and Preventions
Is there a treatment or a cure?
Despite extensive research on HIBM, there is no solid cure or treatment for the disease. There is no known way to slow the progression of HIBM in the body. However, researchers have proposed a number of measures to keep the disease controlled within the Iranian Jewish community.
How do we prevent the spread of HIBM?
There are two preliminary ways to prevent this disease from spreading. The Neuromuscular Disease Foundation encourages both partners to get screened before or during early pregnancy to prevent passing HIBM on to future generations. The first is through genetic screening. Scientists have developed screening tests that NDF aggressively promotes through regular campaigns, which involve a simple cheek swab to test for signs of the disease in screened individuals’ DNA and to determine whether they have the disease or are a carrier.
Furthermore, HIBM can also be prevented through in-vitro fertilization. Current technology allows the testing of embryos so that unaffected embryos can be selected for implantation. However, couples that have already conceived can test the fetus during pregnancy to see if the embryos have been affected. If so, they can decide to terminate the pregnancy. These screenings are available at locations including the UCLA Prenatal Diagnosis Center, Cedars-Sinai Medical Genetics Institute and Advancement of Research for Myopathies
Treatments now exist to address the symptoms of the disease, including rehabilitation programs or simply counseling for the person who has the disease and his or her family. Lastly, there have been new advancements in devices to increase mobility for HIBM sufferers.
Despite extensive research on HIBM, there is no solid cure or treatment for the disease. There is no known way to slow the progression of HIBM in the body. However, researchers have proposed a number of measures to keep the disease controlled within the Iranian Jewish community.
How do we prevent the spread of HIBM?
There are two preliminary ways to prevent this disease from spreading. The Neuromuscular Disease Foundation encourages both partners to get screened before or during early pregnancy to prevent passing HIBM on to future generations. The first is through genetic screening. Scientists have developed screening tests that NDF aggressively promotes through regular campaigns, which involve a simple cheek swab to test for signs of the disease in screened individuals’ DNA and to determine whether they have the disease or are a carrier.
Furthermore, HIBM can also be prevented through in-vitro fertilization. Current technology allows the testing of embryos so that unaffected embryos can be selected for implantation. However, couples that have already conceived can test the fetus during pregnancy to see if the embryos have been affected. If so, they can decide to terminate the pregnancy. These screenings are available at locations including the UCLA Prenatal Diagnosis Center, Cedars-Sinai Medical Genetics Institute and Advancement of Research for Myopathies
Treatments now exist to address the symptoms of the disease, including rehabilitation programs or simply counseling for the person who has the disease and his or her family. Lastly, there have been new advancements in devices to increase mobility for HIBM sufferers.
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