Bois dentelle - group of people with ultra-rare diseases and SWAN is a society, which mostly consists of people, who has so called status SWAN - Syndrome Without a Name. This society also includes people, who are known as probably only diagnosed medical cases in Poland (though they may have theirs “copy” somewhere in the world).
Why we chose this name?
Name of the group comes from kind of the tree, which is most rare in nature. If you have luck, you can find it amongst plant life of the Mauritius Island (Indian Ocean). Bois dentelle… There are probably only two of those trees in natural setting, in the whole world! Scientists are trying to save them and increase their number, which is almost impossible. So, we have decided that situation of this trees is similar to situation of people, who belong to our group - ultra rare, difficulties in scientific research, fight for life…
Why have we created “Bois dentelle”?
Main goal of creating such group is support and help in this special and difficult situation. We can observe many groups, societies and foundations, which are gathering people with particular rare diseases, as there are more people with this illness, but there is no such institutions, which would support people (especially adults), who:
- fight with lack of medical knowledge about cause of their symptoms, medical syndromes (SWAN)
- are already diagnosed, but almost for sure won’t find second case like them in Poland
Usually such persons belong to some group, foundation or society, where there are people with this given ultra rare diseases or it has members with more common illnesses. Usually it leads to pushing problems of people with ultra-rare diseases to the margin, which leads to misunderstanding, feeling of loneliness and being lost.
How does “Bois dentelle” helps?
Coming forward to meet needs of people in described situation, apart from public site, we have also started closed group on Facebook, which will be available and visible only to those people, who are forgotten by medicine (also for their families and care takers).
Furthermore, with common effort, we will be trying to help each other, by:
1. Exchanging personal experiences.
2. Psychological support.
3. Support in searching for another person with given diagnosis or symptoms, without diagnosis.
4. Finding contacts to specialist doctors in Poland.
5. Gathering as much information as possible, about clinical trials, available therapies, diagnosis, available both in Poland and worldwide.
6. Cooperation with another institutions and media.
7. Organizing meetings, excursions, weekend trips, conferences.
8. Transforming this group into foundation, but only if there will be such need and legal possibilities.
Why is it worth to look for “YOUR COPY”?
In case of people with SWAN status, it is worth to look, so you could get right diagnosis and apply right therapy. In case of already diagnosed people, who are single cases in Poland, it’s worth looking for as much information as possible about your diseases and type of therapy. You have to realize, though, that fact that someone has same type of diseases does not mean it will have exactly the same course (it depends from individual predispositions). Though some symptoms might be common for given illness and lead to similar effects - exchanging experiences might be priceless, because thanks to that, you can find out, for example, what kind of treatment was hurtful, what can you do and what you can not in given case - it can be about life style, safe hobby, physiotherapy, medical procedures.
Another important argument for looking for “your copy” is psychological factor - we mean knowledge, that you are not the only one living “medical case” in Poland (and sometimes in the World), can bring relief, who has hard health and life situation. Such person may feel less misunderstood, less lonely…
What happens with people, who belong to Bois dentelle, but found their copies?
We don’t remove them from the group, they can stay with us as long as they want and offer their help, for example explain how they have managed to find “their copy”. Though we will encourage them to creating their own group, forum or some foundation.
Brak komentarzy:
Prześlij komentarz