VHL online patient community: leverage for mutual support

Since December 2010, the Von Hippel-Lindau online patient community enables patients to meet, talk, learn and get stronger.

Gerhard AlsmeierVon Hippel-Lindau (VHL) is a rare genetic multi-system syndrome where the body develops tumours, due to the alteration of the VHL tumour suppressor gene. They generate in the brain, the retina, various areas of the nervous system, adrenal glands, kidney and pancreas.

 

Gerhard Alsmeier is a regular contributor to the VHL online patient community. He is 50, lives in Germany and was diagnosed with VHL, at 38, after a life plagued with headaches, several tumours and surgeries. His first complete screening after his diagnosis revealed many tumours on his spinal cord and in his pancreas. “When I realised how badly I was informed over the last decade and learned that this was fairly typical for such a rare disease as VHL is, I decided to set up a support group. We founded our group the same year and we are growing steadily. I believe we have improved the situation of many patients with VHL in Germany by sending information to them, meeting and exchanging experience and supporting each other, especially when one is in hospital,” says Gerhard.

 

Karina Villar is also a regular visitor of the VHL online patient community. She contributes on behalf of her sister Ana Coral, 36, who is affected with VHL. Karina graduated in medicine and is specialising in VHL. “I don't have VHL myself, but in a way I'm affected too. Ana CoralMy sister Ana Coral was diagnosed at the age of 21. Her doctors didn't know much about the treatment and controls she needed, and they weren't interested in learning about VHL. That is why I specialised myself in this disease. My sister has a de novo mutation, so she is the only one person in our family with VHL,” explains Karina. To date, Ana Coral has had 4 neurosurgeries, kidney surgery for a renal cancer and lost the vision in her left eye and hearing in her left ear. “She is always worrying about the future but we all encourage her to go on with her life without thinking about VHL,” says Karina.

 

This good advice is not easy to follow, though. After her fourth neurosurgery, Ana Coral had a post-operative problem and now has some difficulty with coordination, especially on the left side of her body. Stairs are a big problem for her and her recent fall at work has made things worse. Ana Coral works for the Regional Delegation of the Ministry of Agriculture in Toledo, Spain. There is no elevator and no toilets on her floor and last February she fell down the stairs. With the help of Karina, Gerhard and other members of the VHL community, she is now campaigning for her right to an accessible office.

 

VHL patient communities website“The online patient community brought together international patient groups to moderate the forum and provide useful content for the website, based on new, patient generated knowledge. As a result of increased cooperation between the European groups, the first European Von Hippel-Lindau leadership meeting was held in September in Cologne to discuss creating a European federation of VHL patient groups,” says Robert Pleticha, Online Patient Communities Manager. Gerhard Alsmeier was in Cologne: “Everyone realised how important it is to exchange experience and to learn what is working positively in other countries. The website www.rarediseasecommunities.org is a great tool to have and we are going to use it even more.”

 

More information:

Von Hippel - Lindau (VHL) Information Europa www.vhl-europa.org

German VHL Association: www.hippel-lindau.de

Spanish VHL Association: www.alianzavhl.org

VHL Online Patient Community

Rare Disease communities


This article was first published in the November 2011

Page created: 26/10/2011
Page last updated: 06/08/2013
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases