It is with very great pleasure that we announce the formation of VHL France, an affiliate of the VHL Family Alliance in France. We are delighted to join with the many other national groups in providing support to other VHL families in France and in spreading information about VHL in France and French-speaking countries.

You asked me to share our experience with VHL - I say "our" because my husband and two children are affected. In 1983, at the age of 34, my husband underwent brain surgery after six months of suffering. The diagnosis was delayed. The tumor was in the cerebellum, the cyst had grown to the size of an orange, and emergency surgery was followed by five weeks in a coma. My husband came out of the coma with paralysis on his left side. A long, very long period of rehabilitation brought him through to complete recovery with no disability. This is a great message of hope to share with other VHL patients with this kind of lesion, - with a lot of strength of conviction on his part and the loving support of those around him, he achieved a full recovery.

At a medical check-up in 1987 they found a retinal hemangioblastoma near the optic nerve of the left eye of my 15-year-old daughter. According to the first doctor, there was only an unfortunate coincidence between my husband's surgery in 1983 and the retinal lesion of my daughter. According to a second doctor there was almost certainly a relationship between these two events, but he would need to do further investigation.

In June 1988 my husband had his left kidney removed.

When at the end of 1988, my son, then 15 years old, was also found to have a retinal lesion in the periphery of one eye, there seemed to be no further doubt that this was a hereditary condition, but what? They had still they had not identified the disease in question. We began a lengthy journey from doctor to doctor. Since I work in the medical press, I began to do my own research among the published journal articles, and found my way to Dr. Stéphane Richard who has since joined the VHLFA Clinical Care Program ( see page 8).

After a series of tests on Peggy, Alexandre and Michel, in April 1994 my husband had an operation on his right kidney to remove a series of small lesions. We are very glad to be in touch with Dr. Richard these last two years, and follow a regular schedule of check-ups consisting of:

every three months an eye examination, with laser treatment if necessary to control new hemangio-blastomas.
once a year an MRI of the spine and brain
once a year a renal scan for my husband and two children.

I am now convinced based on our experience that there exists in France, and perhaps in other countries as well, a lack of knowledge of this disease which leads to delayed diagnosis and sometimes grave consequences. I also believe that access to helpful and complete information can help people manage their health and avoid the advanced stages of this disease.

This is why my husband and I have decided to form this association. Dr. Richard has agreed to serve as medical advisor to our group, and four other eminent physicians have joined our Medical Advisory Board.

I hope that with the association of all the VHL societies which exist we can mobilize this information within and beyond our respective national territories.

We are delighted that VHL France will be mentioned in the VHL Family Forum, and are pleased with the brochure "Qu'est-ce que le VHL?" in French which announces our partnership.

Please convey to all the members of the VHL Family our sincere wish that this will be without doubt a year rich in progress on VHL.

Copies of "What is VHL?" are now available in English, French, Spanish, and Portuguese. Other languages are in preparation. This article translated from the French by Joyce Graff.

As published in the VHL Family Forum, 3:1, March 1995. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory