Living with von Hippel-Lindau (VHL) disease can affect much more than your physical health. Whether you are living with VHL yourself, caring for someone you love, or supporting a family member or friend through diagnosis and treatment, it is completely understandable to experience a wide range of emotions.
Many people describe periods of uncertainty, anxiety, frustration, grief or isolation. The lifelong nature of VHL, regular monitoring, medical appointments and the possibility of new tumours can place an emotional burden on individuals and families alike. Carers and loved ones may also find the ongoing responsibility and uncertainty challenging.
Looking after your emotional wellbeing is just as important as looking after your physical health. Reaching out for support, connecting with others who understand, and taking time to care for yourself can all make a meaningful difference.
Over time, this page will continue to grow with practical advice, resources and information to help support the wellbeing of everyone affected by VHL.
In the meantime, we recommend visiting RareMinds, a UK charity specialising in mental health and emotional wellbeing for people living with rare conditions and their families. Their Wellbeing Hub offers information, practical guidance and specialist resources covering topics such as coping with uncertainty, fatigue, relationships, navigating healthcare, and sources of emotional support.
Visit RareMinds Wellbeing Hub: HERE
Ten Tips for Living Well with an Incurable Condition
There is no single “right” way to live with VHL, and everyone copes differently. These suggestions may help you feel more informed, supported and in control.
Take control of your condition.
Learn as much as you can from reliable sources and be involved in decisions about your care.
Know your options
Don’t be afraid to ask about different treatment choices or seek a second opinion if appropriate.
Find the right healthcare team.
Having doctors who understand VHL and listen to your concerns can make a real difference.
Build a partnership with your doctor.
Ask questions, share your concerns and work together to make decisions that are right for you.
Recognise that medical decisions often involve trade-offs.
Take time to gather information, weigh up the benefits and risks, and consider what matters most to you.
Keep living your life.
Make plans, pursue your interests, set goals and continue doing the things that bring you purpose and enjoyment.
Find an advocate – or be your own.
A trusted friend, family member or healthcare professional can help you navigate appointments and decisions. Learning to speak up for yourself is equally important.
Be kind to yourself.
Living with an incurable condition can bring difficult emotions. Try not to let guilt or self-criticism take over. Seek support when you need it.
Build a support network.
Family, friends, healthcare professionals, support groups and the VHL community can all provide encouragement and practical help.
Don’t let VHL define who you are.
Although it is part of your life, it doesn’t define your identity. Continue to nurture your relationships, hobbies, ambitions and hopes for the future.
Crisis and Emotional Support
If you are finding things particularly difficult, please remember that you do not have to cope alone. Living with VHL can sometimes feel overwhelming, and it is okay to ask for help.
While VHL UK/ Ireland is not set up to provide professional mental health support or counselling, there are organisations that do so. If you are struggling with your emotional wellbeing, we encourage you to speak to someone you trust and consider seeking support through one of the following:
- Your GP – They can discuss how you’re feeling, offer support, and refer you to appropriate local mental health services if needed.
- Macmillan Cancer Support – Offers free emotional, practical and financial support for anyone affected by cancer. Call 0808 808 00 00 (8am–8pm, 7 days a week), or access online chat and email support via the Macmillan website.
- Mind – Provides information and support for anyone experiencing mental health difficulties. Call the Mind Support Line on 0300 102 1234 (Monday to Friday, 9am–6pm) or visit their website for information and crisis support.
- Your local hospice– Contrary to popular belief, hospices are not a place to go to die. They are a wonderful source of care and knowledge for living, and many have dedicated counsellors who can offer immense support
If you feel unable to keep yourself safe, or you are worried that you may act on thoughts of harming yourself, this is a medical emergency. Call 999, go to your nearest A&E department, or contact NHS 111 and select the mental health option for urgent support.
