The Polish Association of the Families with Marfan Syndrome and Other Geneticaly Conditioned Disorders is a non-profit organization established 12 years ago in Gdynia.
It is the only organization dealing with this issue in Poland and at present includes over 150 families. Every month new members are being registered.
The President of the Association, elected for third work period, is Mr Jan Kawalec.
Our association is trying to support people with Marfan Syndrome and other related disorders in different areas of life. We organize 14 day training courses for people with Marfan Syndrome and their care givers, where they are educated, rehabilitated, can have some recreation and the opportunity to share experiences. We arrange regular meetings with our members and professionals (doctors of related areas, therapists etc.). A lot of effort is put into promoting the information about problems connected with Marfan Syndrome and other disorders. We printed 100.000 leaflets introducing this disorder and disseminated them among several institutions, social workers, welfare clinics, hospitals, etc. We have been trying to get the media interested in this problem. And there have been some television and radio programmes, as well as articles written, describing this disease. Our future activities will be aimed at supporting people with this kind of disorder, in their local community, with care, treatment, rehabilitation, education of the individual with Marfan syndrome and their family, etc. We would also like to provide some scholarships to enable the most talented young people with Marfan syndrome and other disorders to gain a good education, which will help them have satisfying lives. This same reason makes us consider organizing a computer training course for young people. We have cooperation with the Genetic Department of Medical Academy in Poznan. Together we want to start research on Marfan Syndrome, which would help us to identify the estimated number of people with Marfan Syndrome and other related disorders in Poland. However, all our activity and research is limited because of a lack of funds. We work as volunteers and it is very difficult to provide all the necessary services. We are begining to obtain some local administration grants and some government grants for particular tasks, but to start more serious research and support of those with Marfan Syndrome we need funds.
With satisfaction I would like to inform you, that at the end 1995 we instituted in Poland the first Marfan Association. It's full name is the Association of Families whose members are affected by Marfan Syndrome "Help Our Children". Potentially the Marfan Syndrome is a fatal genetic disorder of the connective tissue that may affect the skeletal system, eyes, lungs, blood vessels and heart. The goal of our association is to find as mamny people as possible affected by Marfan Syndrome. We try to create a complete system of diagnosis, therapy, rehabilitation and professional knowledge about it. By publishing announcements in newspapers, broadcasting TV, and radio programs we try to inform the society about it's existence. We try to make people aware of it's danger. We ask all the organizations and individual sponsors as well for help to our patients.
A person affected by a Marfan Syndrome should have periodical medical and echosonographic heart examinations. Physical efforts like weight-lifting, should be avoided. It is important that the phisical efforts be steady, not very tiring as far as breathing pace is concerned. Phisicial efforts supposed to supervised by the experienced specialist. Walks on the fresh air are recommended. A person affected by Marfan Syndrome should observe a light diet, with plenty of vitamins which is good for liver.
In our Association we gather people with Marfan syndrome, as well as all the volounteers willing to help them. Please contact us, if you want to exchange with us informations and experiences. We'll be glad to do it.
Jan Kawalec - President of Polish Marfan Association
Polish Marfan Association
49/17 Świętojańska Street.
81-391 Gdynia, Poland.
Mobile phone #. (+48) 601-28-62-45
tel. (+48-58) 620-97-23
tel. or fax. (+48-58) 629-44-25
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