A diagnosis ofvon Hippel-Lindau disease (VHL)may come with anger, fear, and uncertainty.
Although that is possible, there are ways to watch for thesetumorsandtreat themif they develop.
There are multiple emotional, physical, and social considerations when living with VHL.
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These feelings are normal and completely valid.
TheVHL Allianceoffers a hotline to call and connect with others who have experience with VHL.
Feelings of being alienated or alone are common for those with VHL.
Keeping in contact with others and maintaining relationships will help prevent feelings of isolation.
Consider meeting with a financial planner to help sort out your finances.
Having trust in your healthcare team can be a big part of a successful journey with VHL.
Summary
Living with VHL can bring a lot of uncertainty and stress.
Establishing supportive relationships, living a healthy lifestyle, and following recommendations by your healthcare provider can help.
A Word From Verywell
It is important to know that whatever youre feeling, it’s OK.
The emotions that come with living with VHL can vary from day to day but are all normal.
Finding great support systems can be helpful.
Remember that youre not alone.
If youre feeling depressed, reach out to your healthcare team for help.
2015;23(1):34-40. doi:10.1038/ejhg.2014.44
VHL Alliance.Healthy lifestyle.
