Nov 5/23
🍁 When I’m Sixty-Four… Prognosis?
I’m just a patient who is “already’ 53! A personal search* and feedback from VHL patients (in Canada and elsewhere) produces information.
- vhl.org I will check back with VHL Alliance website
- Some families share that they have a history of VHL related disability and death. Others have said that they realize that some are 'worse off' in terms of VHL's severity
2023...
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*Google and Pubmed Searches: “VHL life expectancy”. All articles are full-text online
**also Penetrance: VHL pathogenic variants are highly penetrant. Almost all individuals who have a VHL pathogenic variant are symptomatic [tumours] by age 65 years
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