Von Hippel-Lindau community

Von Hippel Lindau (VHL) is a rare genetic cancer syndrome, an alteration in the VHL-tumor-suppressor gene, which puts the individual at increased risk of developing tumors in various organs throughout life.

My personal pathway, my strength ...

Written by lolea9, published about 1 month ago.

LIVING WITH VHL (Von Hippel-Lindau)

VHL is an autosomal dominant gene, a tumor suppressor. In the general population, this gene does its job and makes a protein that suppresses the development of any tumors as they arise. In my case, this gene is defective. Thus, damage of any kind arises at different rates and in different organs. VHL affects mainly the following areas: pancreas, kidney, cerebellum, central nervous system, retina and adrenal glands. In men we must also monitor the testicles. It is also a hereditary disease that predisposes most to cancer. This gene is thus passed on genetically, but in my case, it was discovered that my parents were not affected. So, at my conception the gene was formed with an abnormality. Unfortunately, my biggest fear proved correct when my Genetics M.D (Christine Maugard) told us, my husband and I, that I forwarded this defective gene to our son. Since then, began the round of medical examinations and medical visits ... with all that it implies: stress, anxiety, anguish, medical follow-up for my son and I, making appointments, exhaustion, fears ... But we are lucky to be followed very closely by a team of wonderful specialists.
From the beginning, even before my diagnosis, Dr. Alain Primeau (GP) detected an abnormality in a urine test. He then called and told me that he intended to investigate further. I accepted, of course. Various tests, waiting and still waiting for the results and then he told me that my kidneys had lesions. It was unclear of what types these were, so I had to move on to further investigation. Still waiting with anxiety then he told me that there was something in the pancreas. I went to St-Luc to meet Dr. Richard Letourneau who also wanted me to undergo further investigations. Again I had to cope with expectation and anxiety and I was not the only one! The whole family, colleagues and friends were very afraid. There was not only the fear of the results, but also the fear of these impressive investigations which were unknown to me. Finally, he told me that cancer was detected in the sample taken from a lesion on my pancreas. The shock that it caused me was incredible. Finally, after surgery and analysis, it appeared that the tumor was neuroendocrine in nature and that chemotherapy would not be necessary. I was so relieved! But shortly after I was told that kidney tumors were cancerous. Another shock! But at that time I expected that a bit because I had read documents about the disease on the site of the alliance of people with VHL. Corporic-caudal Pancreatectomy with splenectomy, two partial nephrectomies (right and left), a suboccipital craniotomy (along with three other interventions to treat various complications). And it's not over, other surgeries are underway!

To successfully get through all that, to succeed in accepting this fate and not feel guilty for my son, I found simple and effective ways.
One day Dr. Letourneau said he would never let me down and that I had all the inner resources to get through this. I have long wondered how to get these resources and then I found it with the help of my psychologist Dr. Marc Berthiaume. First, I have a toolbox in my imagination in which is all that calms me. Looks, words, heats, memories, relaxation techniques, self-healing with the method of ECHO of Dr. Crombez ... everything, everything, anything that can help me. Then I collaborate. Always work together and feel involved in my healing process. I share everything with my doctors, I get informed, they tell me, we help each other. Anyhow, I am part of the team. Then, I'm not afraid to express my feelings in words or tears. I'm not afraid to seek medical and psychological help as it is also necessary to take my fate in hand so as not having too much recourse to our loved ones who also have to live with this disease that affects the people they love. And finally, I consider it my duty and pleasure to have projects and stay active as much as possible to carry them out until their achievements. It's hard, it's a constant job but it's so exciting!
All this also allows me to accept and understand that there can be complications and frustrations both in my health and my personal life, but it is also part of my life. Part of life. You just have to deal with the negative events of your life and not lose your energy at finding that some situations are unfair or unacceptable. Don't complain of delays and waiting times etc. Our life is so short; can we manage to fill it with beautiful things?! This disease forces me to look differently at me and the life I want to live.
I want to take advantage of this public forum to thank all my so good, charming, competent, sensitive and professional doctors. Doctors: Alain Primeau (GP), Marc Berthiaume (psychologist), Richard Létourneau (hepatobiliary and pancreatic surgeon), Pierre I Karakiewicz (uro-oncologist), Alain Bouthillier (neurosurgeon), Christian Ferremi (ophthalmic surgeon), Isabelle Bourdeau (endocrinologist), Christine Maugard (geneticist) and Claude Fortin (gynecologist who is always aware of what I live).
Thanks to all my family and friends who are always there for me.
A special thanks to my son for whom it’s really not easy but he is a source of inspiration through his beautiful joy of living and fighting spirit: Continue to be the man you must be. I am proud of you and I love you…

Written by lolea9, published about 1 month ago.

Patient groups

  • VHL Family Alliance International

  • German Assoc. for VHL Families

  • Danish Assoc. for VHL

  • Alianza española de familias de VHL

  • VHL France

  • A Magyar VHL Társaság

  • Dutch VHL Organization

  • VHL Contact Group U.K.

  • Argenina VHL Assoc.

Von Hippel-Lindau Recent Activity

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    Hi:
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    Greetings
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    Ana quiere seguir trabajando, pero llegar hasta su puesto es imposible
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    Mi hermana tiene una enfermedad rara, oncológica, progresiva, altamente incapacitante e invalidante, llamada VHL (von Hippel-Lindau). Tiene 37 años, y desde que fue diagnosticada en 1995 (con 21) ha sufrido 4 neurocirugías, una cirugía por cáncer renal, ha pe...

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    Percutaneous radiofrequency ablation of renal cell carcinomas in patients with von Hippel Lindau ...
    news, published 6 months ago

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    Abstract

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