Living With Von Hippel-Lindau Disease

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Von Hippel-Lindau (VHL) disease is an inherited disorder that causes tumors and fluid-filled sacs (cysts) to grow in different parts of the body. Because VHL is inherited (passed through families), it is likely that one or more of your biological relatives also has the disease. This can make living with the disease even more stressful.

VHL disease can't be prevented or cured and that can be difficult to cope with. Research into families with VHL report a range of emotional, social, and practical challenges.

In this article, coping methods for the emotional, practical, social, and physical effects of living with VHL will be discussed.

Doctor holding patient's hand

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Navigating the Emotional Effects

Being diagnosed with an incurable health condition can be frightening. Feeling scared, depressed, anxious, or angry after a VHL diagnosis is completely normal. Your friends, family, and caretakers may feel this way, too.

If living with VHL becomes overwhelming, experiment with ways of managing stress and painful emotions. When you find a technique that works, incorporate it into your daily or weekly routine. Some ideas include:

Recap

Being diagnosed with an incurable disease can be overwhelming. Feeling angry, sad, stressed, and scared is normal. Building coping mechanisms like exercise and relaxation techniques into your routine may benefit you.

Prioritizing Your Physical Health

With VHL, some factors, like genetics, are out of your control. But you can control what you eat and your activity levels.

Sometimes, VHL-related tumors can be cancerous and certain lifestyle factors are known to increase the risk of developing cancer, including smoking, drinking alcohol, and obesity. Cutting known sources of cancer-causing chemicals like those in cigarettes out of your life is a good place to start. You may also wish to consider:

  • Taking part in regular exercise: Endorphins released during exercise may help combat feelings of anxiety and depression. 
  • Making healthy food choices: Eating lots of fruits and vegetables can help reduce your cancer risk. That’s one reason the American Cancer Society recommends eating a variety of these foods every day. Certain diets might not be appropriate for individuals with VHL disease who have tumors on the pancreas, adrenal glands, or kidneys. Speak to your healthcare provider about any foods or diets to avoid.
  • Scheduling time in your calendar for regular breaks and self-care.

Consult with your healthcare provider before making any drastic lifestyle changes. Every VHL patient is different. Even members of the same family can have different symptoms. So, what works for a relative might not work for you.

Recap

Sometimes VHL disease can cause cancerous tumors to grow. The American Cancer Society recommends regular exercise, eating a diet rich in fruit and vegetables, and stopping smoking to help reduce the risk of cancer. You should consult your doctor before making any drastic lifestyle changes.

Building a Social Support System

Having a strong support system can help you overcome the challenge of living with an incurable disease. Enlist friends and family members to help you cope with your condition.

It's also a good idea to seek out others with the same condition online or through community support groups. Recognizing that you are not alone and sharing coping strategies can help you, as well as allow you to help others in your situation.

The VHL Alliance is a nonprofit organization founded by three families with VHL to share experiences, knowledge, and support. The VHL Alliance offers support that includes:

  • A toll-free hotline staffed by volunteers with personal experience of VHL
  • A pen pal program
  • Facilitated discussion calls
  • Social media groups
  • Online discussion groups

Recap

VHL is rare and you may feel lonely in your diagnosis. Seeking out others with the same condition online or through community support groups can be helpful. Recognizing that you are not alone and sharing coping strategies can help you and allow you to help others in a similar situation.

Finding Assistance With Practical Needs

Many unexpected financial issues can arise from VHL treatment. These include the additional costs of medications, medical devices, traveling for treatment, and hospital parking fees. Many clinics and hospitals keep lists of resources for financial aid to help you during and after your treatment. Talk with your healthcare team about your options.

If friends and family offer to run errands, give you a ride to the hospital, prepare meals and help with household chores, learn to accept their help. It will not only benefit you but make them feel like they're making a contribution at a difficult time.

A VHL diagnosis affects the entire family and adds stress, especially to the primary caregivers. Accepting help with meals or chores from neighbors or friends can go a long way in preventing caregiver burnout.

Recap

Several practical challenges can come along with a VHL diagnosis. While learning to accept help from others may be out of your comfort zone, there's no shame in it.

Summary

Living with an incurable disease can bring a range of practical, emotional, financial, and social challenges. Thankfully, there are support groups available so you feel less alone, resources available at many hospitals to help with the financial impact of the disease, and help for caregivers too. While VHL is rare, you are not alone in your diagnosis and accepting help is not a sign of weakness.

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3 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. Kasparian NA, Rutstein A, Sansom-Daly UM, et al. Through the looking glass: an exploratory study of the lived experiences and unmet needs of families affected by Von Hippel–Lindau diseaseEur J Hum Genet. 2015;23(1):34-40. doi:10.1038/ejhg.2014.44

  2. Schottenfeld D, Beebe-Dimmer JL, Buffler PA, Omenn GS. Current perspective on the global and United States cancer burden attributable to lifestyle and environmental risk factorsAnnu Rev Public Health. 2013;34:97-117. doi:10.1146/annurev-publhealth-031912-114350

  3. American Cancer Society. American Cancer Society guideline for diet and physical activity. Updated June 9, 2020.