posted on Oct, 14 2016 @ 10:49 AM
Does anyone on ATS have experience or knowledge about Von Hippel-Lindau Disease? It is a rare genetic disorder that results in tumors and cysts
growing in multiple organs in the body (they can be cancerous or non-cancerous).
I'm asking for a loved one. They do not have a family history (that they are aware of) with "VHL" disease.
From the 3rd source I found this:
Those without a family history must have two or more CNS hemangioblastomas, or one CNS and a visceral finding (with the exception of epididymal and
renal cysts) to have a diagnosis.
If it turns out that they have it, the good thing is the doctors discovered it early. Any personal experience or input about this would be greatly
appreciated. Thank you in advance.
US National Library of Medicine: link
Here is another resource I found with some good information:
edit on 14-10-2016 by FamCore because: Added 3rd link (and quote from that resource)