I am a newspaper reporter in Batesville, MS. I was asked by a woman to do a story about her friend in an attempt to get the friend some financial help and medical information. The friend has two children, a boy 8 years old and a girl 6 years old. They have both been diagnosed with RP. The boy has lost 50% of his sight. The girl has been diagnosed but the deterioration has been slight to this point, though she does need glasses, but can't wear them according to the mother. They are seeing a Dr. John Elfervig in Memphis who tells her that nothing can be done, but there is ongoing research. This woman is a single mother living on salary of a part-time librarian at the elementary school, SSI for her son, Medicaid for the children, and food stamps. Is there anything that this woman can look to for help for her children's RP?
This is fortunately a pretty rare condition, however, there has been much research in this area. There has been alot of gene research into this disease and this can be found in the medical literature. Of clinical importance, there has been some articles relating to high dose vitamins, but it is my understanding that this has not shown any definite long term benefits. This is somewhat controversial. Cataracts are more common in RP and this is a very successful surgery if necessary. There has also been some studies evaluating certain medications in those patients who suffer from another retinal condition associated with this disease called cystoid macular edema. Unfortunately, for most people with RP, there has not been any major breakthroughs. In this families case, it sounds as though the son has suffered moderate amount of vision loss for a young age. It is certainly important that they are connected to a low vision specialist to help him and work with him as he is likely to lose more peripheral vision. Your retinal specialist should be able to point you in the right direction.
Good luck. This information is provided for medical educational purposes only. Sincerely, HFHS M.D.-JL
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