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.

And all of a sudden... 56 years, alone, out of work and VHL

Written by Cecilia, published 14 days ago.

First finding, some renal cysts, then several. Massive cyst in the abdomen, that runs from the right kidney and tumor underneath it near the excretory tract and renal artery, then adrenal with adenomata, tumor below the left one, insufficient lavage, 2 pancreatic cysts, "something" in the walls of the uterus, adenomegaly parathyroid, jugular-carotid ganglions, recent image in brain study. Dr. Barontini was consulted from the Durand Hospital and after some analysis, the diagnosis was confirmed. My son (deceased) was extirpated from the right adrenal and 2 chromaffinoblastoma cysts. His autopsy revealed a hen egg-sized "cyst" inside the heart and another similar one (that we already knew about) in the liver. My dad had lung cancer from which he recovered, it came back again in mediastinum and he passed away. My paternal grandfather suffered from Paget's Disease (bones) and my understanding today is that it is related to those VHL patients !! After their death, I deduce it comes from my father's side of the family.
I will expand on this later. Thanks !!!

Written by Cecilia, published 14 days 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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    Other sources of info on VHL..
    topic, published 9 days ago

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    The National Institutes of Health have Genetic and Rare Disease (GARD) Information specialists that may be able to help you find information.

    The GARD Information Center does not provide genetic counseling and does not offer diagnostic testing, referrals, medical treatment or advice.

    Ther...

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    VHL Family Alliance Newsletter September 2011
    document, published 23 days ago

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    Survey on pheochromocytoma and paraganglioma
    topic, published 23 days ago

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    From Joyce and Sue at the VHL Family Alliance:

    We have prepared a survey to gather information from anyone who has had a pheo, has an active pheo now, or thinks they might have a pheo but has not yet achieved a clear diagnosis. We need to hear your experience, and your feelings about how the ...

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    Just to Know
    topic, published about 1 month ago

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    Is this a good thing to keep everything for ourselves when we learn that a tumor is present and "Secret"? My mother and sister cry when the subject comes up. I'm scared and I do not know who to talk to ...

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    Cartel VHL (ES)
    document, published 2 months ago

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    Esquema de las principales zonas afectadas en la enfermedad de von Hippel-Lindau

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    von Hippel–Lindau disease: A clinical and scientific review
    topic, published 3 months ago

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    Full Text article from European Journal of Human Genetics:
    http://www.nature.com/ejhg/journal/v19/n6/pdf/ejhg2010175a.pdf

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    ELST Endolymphatic sac tumor
    topic, published 5 months ago

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    Hi:
    In September 2009, I had surgery to remove an Endolymphatic Sac Tumor (also known as ELST). Unfortunately, though the symptoms began more than 15 years ago, it couldn't be seen in the screenings, so I have lost some hearing in that particular ear.

    In my other ear I have some symptoms, how...

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    Greetings
    topic, published 5 months ago

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    Just introducing myself; on the plus side - all my brothers and all my children are clear of this horrible disease. My father died of this at 43 and his mother at 36. I have had both my adrenal glands removed due to pheochromocytomas. I have multiple bilateral kidney cysts, fortunately not yet ca...

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    Ana quiere seguir trabajando, pero llegar hasta su puesto es imposible
    news, published 5 months ago

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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

    Background Radiofrequency ablation (RFA) is accepted as a minimally invasive treatment of renal cell carcinoma (RCC). However, RFA is not fully evaluated for treating RCC in patients with von Hippel Lindau (VHL) disease who cannot undergo surgery due to serious postoperative morbi...