- FDA/VHLA Patient Listening Discussion (vhl.org, 2020)

Self-advocate and talking tips:


Being a healthy and effective self-advocate:

VHL – be educated

Help - request when needed

Lifestyle – diet, exercise, stress symptoms


Communicate needs and feelings

Ask questions until information is clear

Needs of patient are central

2 more sets of tips for talking with doctors (and other healthcare team members):



·         Have backup. While it is important for the patient to start getting involved in their medical care, that does not mean they have to do everything alone. Think about how the patient can take the lead while still keeping their parents and caregivers involved and in the loop. It can be helpful to have a second pair of ears at appointments to help remember the conversation and explain things one might not have fully understood.

·         It’s all about the patient. Remember, their [“your”] needs are the priority. One should tell their doctors what they are worried about or what they want to address. Sometimes health care professionals focus on something that they feel is important, even if the patient does not agree. Let them know. One can help redirect their doctors to see the big picture of their life and what they need.

·         Medical Diary. Keep a medical diary in order to provide doctors with the complete and detailed information they need. Keep track of any medical symptoms experienced, questions to ask the doctor at the next appointment, and a schedule with all upcoming appointments and surveillance. Ask the doctors what information they need to ensure that the medical diary is a relevant and helpful tool for health management.

Having a medical diary can also help the patient to remember what health care professionals tell them. Most people can only remember 2 or 3 things they are told, unless they write the information down. The patient should take the medical diary with them and write down the information they need to remember.



    Give information about how you are feeling and what you have done to stay healthy. Be honest. If you did not do something you were supposed to do or DID do something you were NOT supposed to do, tell your doctor. Also give your doctor information about how VHL is affecting your life and what your concerns are—now, and for the future.

    Listen and Learn. Listen carefully to your health care providers and learn all you can from them about VHL and what you can do to be healthy.

    Ask your doctors the questions you have about your health. If you do not understand what you are being told, tell them, and ask them to explain it in a different way. You can also ask for a pamphlet or printed copy of the information. VHLA (vhl.org) is a good resource for any information that you would like explained.

    Decisions need to be made about what to do next at every heath care visit. Make sure you play an active role in decision making, since, starting age 18, you are the one who must agree to the plan of care.

    Do your part in following the plan



*Original: What You Need to Know About VHL: A reference handbook for people with von Hippel-Lindau, their families, and their medical teams. VHL Alliance, vhl.org. Edition 6. 2020. pp.78-80