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Hi everyone, In 2012 and again in 2017, I underwent surgeries to remove hemangioblastomas from my brain stem. Recently, however, multiple cysts have been detected in the same area, but what's really ... Show more
After 25+ years of dealing with VHL , my hubby has gotten into the general population category of cardiac/vascular issues... And his new cardiologist is a tad spooked about the effect of a 3 month co ... Show more
Hello! My name is Steph Shuff, and I am a writer working here at Inspire. Every month, I help to write, edit, and publish our Monthly Dose newsletter, a monthly email that highlights articles from ac ... Show more
Hello Can anyone advise if Belzutifan is available in India for patients use? Thank you.
Hi All Did anyone get high blood pressure when their kidney function reduced to stage 3a? from kidney surgeries due to VHL. I kidney function is about egfr 53 but it seems like if I don’t exercise ... Show more
Hello Anyone with VHL vaccinated with Covid 19; 1. How many jabs? 2. Which ones? Pfizer, modernna 3. Did it cause your VHL to get worse? Thank you
Hello What is the risk of haemangioblastomas bursting I.e having a haemorrhage? Any experiences of this or know the risks? Thank you
Hello Does anyone know if it is safe to do high intensity exercise with having VHL? specifically haemangioblastomas in brain and spine. My GP seems to think people with VHl shouldn’t be doing high ... Show more
Has anyone from VHL family tried Belzutifan...if yes, what was the response, as with regards to disease regression, side effects, etc. Suffering from VHL since 30 years- had 5 brain, one spine and on ... Show more
Hello Does anyone have mri scans with contras regularly with reduced kidney function? Thank you