Guest guest Posted October 2, 2000 Report Share Posted October 2, 2000 Dear all, We come from the land down under,as they sang last night in the Olympics closing ceremony. Carla asked about symptoms...Louis has bilateral meningiomas and what they think are cataracts consistent with NF2. I say this because 5 ophthalmologists here have never seen cataracts like this before, but there is definitely opacity on the back of the lens and they think it conforms to the clinical descriptions. Question: I don't understand the relationship between the cataracts and the other symptoms of NF2? Is this simply a frequent problem that goes with the disorder or is the NF2 gene directly implicated in cataract formation on this part of the lens? As far as I can make out,all of the other symptoms are related to the schwann cells...... Question: Can someone please explain what these cataracts look like? What does plaque-like mean? Question? Does anybody know if all NF2 tumors are slow-growing? What is the range you could expect? There is NO research being done in Australia and the Drs(particularly the eye Drs!!) know very little about it. It must be massively underdiagnosed here because it looks like there is about 10 people in Sydney (pop. 4million). Heartened to see how much and how well integrated the research is in USA...... BUT, disheartened to see that they have not progressed very far with clinical trials or gene therapy. WHY IS THIS? Other smaller research bodies are much further advanced in these areas..... would love to hear from anybody , especially parents of children with Nf2. Rosemary. Quote Link to comment Share on other sites More sharing options...
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