Chapter: Patients and relatives
Article: 7 of 7
Update: Okt 12, 2021
“No one has to walk this path alone.” (M.B.)
The “Bundesverband Angeborene Gefäßfehlbildungen e.V.” is the largest German patient support group for those affected by vascular anomalies and is an excellent example of how effective and helpful interaction with involved people can be.
When meeting other affected people, experiences, information and ideas can be exchanged. The “Bundesverband Angeborene Gefäßfehlbildungen e.V.” offers a large network with opportunities for direct encounters and exchanges: patients, physicians and relatives are involved together.
“It’s nice to get to know other people affected. Until now, I always felt like a special case because I didn’t know any other sufferers. To see that many have the same problems and aches and pains is reassuring in a way. And I learned a lot that weekend and look forward to the next meeting.” (F.L.)
A patient support group offers members a protected space in which everyone is accepted as she/he is. Affected people talk to each other much more openly, even about difficult or personal issues, because they do not play a specific role and do not have to explain themselves. Members talk individually or in groups about their difficulties and strengths and learn about positive ways that sometimes inspire people to imitate or follow them. Those affected advise others affected and thus pass on their wealth of experience. This gives people strength for a healthy self-assessment and possibly for their own commitment as well.
“Finally, a few things that help me deal with my illness:
I now talk openly about all facets of my illness – that’s liberating! Becoming aware of your own history – that can help sort out your thoughts! Involve friends and family, address uncertainties and seek help – for a good feeling!
Keep doctor’s appointments, get checked out, and be in treatment – take care of yourself! When operations and procedures are over, devote yourself to other things in life! Pass on your own experiences and share with others!” (L.B.)
We volunteers have a common goal behind our work. René Strobach, 1st Chairman of the German “Bundesverband Angeborene Gefäßfehlbildungen e.V.” says:
“For the future, I hope that the issue of ‘rare diseases’ will be integrated more and more into politics, that one day we will no longer have to fight for every prescription of compression stockings or the important manual lymphatic drainage, that we ‘are part of the community’, although with a rare disease, and that we will continue to find such great doctors who deal with these malformations sometimes beyond what is customary. Simply put, I wish we could live with our different plan.”
The “Bundesverband angeborene Gefäßfehlbildungen e.V.” is an association of more than 460 patients, relatives, physicians and interested parties. It is the major German solution to supporting us affected by congenital vascular malformations.
Its goals are to exchange experiences, to inform and educate patients and physicians, to create a network between those involved, and to support research.
Bundesverband Angeborene Gefäßfehlbildungen e.V.
Blötter Weg 85
5478 Mülheim an der Ruhr
Germany
Tel: +49 208 3099 3990
