Although we are small, we have a permanent Peer Support Volunteer (PSV). Since 2016, VHL Canada has been registered and regulated federally.
Peer support is not just about ‘talking and fixing’. It also involves…
Emotional-Social Support e.g. weekly group chats and individual contacts
Informational Support which includes sharing tips, blogs, posts, and the website
Appraisal Support which includes emphasizing strengths - not judgment or stigma - encouraging persistence and optimism for resolving problems, affirmation of a peer's feelings and behaviours and reassurance that frustrations can be dealt with
The objective of peer support is to provide support based on the sharing of information and experience, mutual counselling and exchange… peer support groups may also include an educational component related to the support function, for example, sessions on managing medications or stress…
Intro to VHL Disease or Syndrome
(next page for: How do you get it? Inherited Genetic Rare or VHL Gene)
- “is one of more than 7,000 known inherited rare disorders. It is a disease caused by a mutation in the VHL gene, which normally prevents tumor growth. The mutation to this gene prevents it from working properly, resulting in both benign tumors and malignant tumors …
- “1 out of 36,000” [over 900 in Canada, 10K in US, 200K in world have VHL]
- “In people with VHL, tumors may develop in up to ten different parts of the body. All of these tumors involve the abnormal growth of blood vessels. Most of these tumors are benign, meaning that they will not spread to nearby organs. However, VHL tumors in the kidneys, adrenals, and pancreas can grow to a stage where they become malignant*…”
- “VHL is different in every patient. Even in the same family, people may show different manifestations of VHL. Since it is impossible to predict exactly which VHL manifestations each person will have, and at what age, it is important to continue to check for all the possibilities throughout a person’s lifetime*…”
- “If you have been diagnosed with VHL, you were born with it. However, age of onset can vary considerably from family to family and from individual to individual. The values provided in Table 1* include age at presymptomatic diagnosis and symptomatic diagnosis …”
CANCER: A general term for more than 100 diseases in which abnormal cells grow and multiply rapidly. Cancer is an abnormal growth of cells. Cancer cells rapidly reproduce despite restriction of space, nutrients shared by other cells, or signals sent from the body to stop reproduction and often form tumors. Because VHL can cause malignant tumors in the visceral organ systems, VHL is considered one of a group of familial cancer risk factors which are transmitted genetically.
Note: Cancer can be a frightening word. It is not one disease, but rather a group of more than 100 different diseases … VHL is one of the inherited cancers [or familial cancer syndromes]. VHL tumors in the kidneys, adrenals, and pancreas can grow to a stage where they become “malignant,” where the cancer can spread to other parts of the body.
For full sections go to...: What You Need to Know About VHL: A reference handbook for people with von Hippel-Lindau, their families, and their medical teams. VHL Alliance. Boston, MA, USA. Edition 6. Revised 2020. Free download at vhl.org.
Belzutifan/Welireg VHLA's Patient Information Page ..."for the treatment of renal cell carcinoma (RCC), pancreatic neuroendocrine tumors (pNET) and hemangioblastomas (HB) in adult VHL patients." The medication is now available to be prescribed in the US. **** [2021]