The National Institute of Health in Bethestha, Maryland is doing a Natural History Study of NF@. The study lasts five years, and they do testing every six months to monitor your NF2 and treat it if needed.
I was accepted into the study last week. For now, I no longer have to worry about battling the health care system trying to get the treatment I need. The NIH have some of the top experts in NF2. During the study, if I need any surgeries, they will be done there at the NIH for FREE. They do no do the ABI placements, so this wouldn’t have helped me get the ABI I needed.
It looks like I go for my first visit in June. I’m very excited about this. I will have top-notch care (like I did at HEI) and will be taken care of for a few years. Now I can RELAX. I was stressing out over not having a doctor for my NF other than Dr. Friedman and his team, but since it’s charity I don’t want to wear out my welcome, ya know?
Thanks everyone for you support! Things are looking up a bit for me medically, I think. Let’s hope it continues.
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