miércoles, 7 de mayo de 2014

Hermien's story - Pemphigus and Pemphigoid community - RareConnect

Hermien's story - Pemphigus and Pemphigoid community - RareConnect

Online Communities for Rare Disease Patients
Founder of the Dutch Pemphigus and Pemphigoid Patient’s Network shares his own story on RareConnect

Hermien's story

Diagnosed with PV in 2001, I started the Dutch patient's network in 2005. I wanted to meet other people with auto-immune blistering diseases and give them the opportunity to exchange their experiences.
Written by Hermien, published 16 days ago.
Hermien's story
In May 2001, after 8 months of consulting one doctor after another in several disciplines, I was diagnosed with Pemphigus Vulgaris by a dermatologist. He put me on prednisone and that worked for me. In 2004 Imuran was added and the prednisone was slowly tapered until zero. I’ve never reached full remission, the PV still is slightly active in my mouth and I still take Imuran.
Because I wanted to learn about the disease and how other people handled it, I joined the discussion group of the IPPF. There was no patient group in The Netherlands and on the Internet there was only a little information. In the beginning, the discussion-group was a wonderful source of information to me. But, however, I felt different, from another country with another culture and a very different health care system. Then I began to feel the need to be in touch with patients in my own country.
In 2004 I went for treatment to the only specialized center we have in the Netherlands at Groningen University Hospital (UMCG). There I met prof. Marcel Jonkman, who is regarded as the authority in our country in blistering diseases. I talked with him about starting a patient's network. He and his staff supported me and told patients, who wanted to meet others, about my plans. They gave me the possibility to contact one of the young doctors with all kind of questions I had regarding the support of other people. I made a leaflet and a simple website in Dutch (www.pemphigus.nl) so that people could find us. 
Early 2005 we had the first meeting with 5 people: 3 patients and 2 partners. From then on we regularly had meetings at the house of a participant. 
In 2006 prof. Jonkman invited me to organize with him and his staff a doctors-patient meeting, which was held in September 2006. Over a hundred people were present, about half of them patients.
Not long after I started the Netwerk I realized that there was much more need for information then for personal contact. Therefore I gradually extended our website with all I learned until it was a good source of information not only about pemphigus and pemfigoïd, but also about other things as how to cope and the side-effects of medication. 
Besides that we started our own online discussion-group, a closed group for patients and care-givers.
I've been (and still am with some) in touch with people in several other countries. A woman from Kenya, who was diagnosed with PNP in her own country, wrote to me. I put her in touch with prof. Jonkman and she came with her husband to the Netherlands to consult with him and his staff. Luckily, according to their laboratory tests, the diagnosis was changed into PV. 
In 2007 I joined PEM-friends in the UK during their yearly weekend. There I also met people from the IPPF.
In 2009 I withdrew as a coordinator and a team of 3 people from the Netwerk took over. The website still is there as is the discussion-group.
Information (in Dutch) on: www.pemphigus.nl - the website of Netwerk Nederland voor Pemphigus en Pemfigoïd.
Written by Hermien, published 16 days ago.

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