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VHL

About this Community

About this community

Inspire connects patients, families, friends and caregivers for support and inspiration.

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How my diagnosis changed my life
Financial and insurance issues
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New
New reply March 25, 2024 • 1:09 AM

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

GOasis1 replies0 Reactions

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Posted March 07, 2024 • 4:21 PM

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

elainef660 replies0 Reactions
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New reply March 29, 2024 • 7:21 AM

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

StephShuff133 replies47 Reactions
Posted February 06, 2024 • 10:26 PM

Hello Can anyone advise if Belzutifan is available in India for patients use? Thank you.

ranaferoz30 replies0 Reactions
Posted November 17, 2023 • 10:53 PM

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

ranaferoz30 replies0 Reactions
New reply March 08, 2024 • 10:04 PM

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

ranaferoz31 replies0 Reactions
Posted October 08, 2023 • 7:25 PM

Hello What is the risk of haemangioblastomas bursting I.e having a haemorrhage? Any experiences of this or know the risks? Thank you

ranaferoz30 replies0 Reactions
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New reply February 21, 2024 • 6:52 PM

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

ranaferoz32 replies0 Reactions
New reply March 24, 2024 • 4:31 PM

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

Rashi25 replies0 Reactions
Posted September 28, 2023 • 10:48 PM

Hello Does anyone have mri scans with contras regularly with reduced kidney function? Thank you

ranaferoz30 replies0 Reactions