Mastocytosis Society Canada Support Forum:British Columbia, Alberta, Northwest Territories, Manitoba, Saskatchewan, Nunavut, Ontario, Quebec, Prince Edward Island, Nova Scotia, Newfoundland and Labrador, New Brunswick, Yukon::
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Welcome Guest. Please Login or Register. Dec 27, 2009, 8:54am
Member comments about this board « Thread Started on May 20, 2008, 7:38pm »
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If you would like to share how this board has helped you, please feel free to do so here. Also feel free to post any hopes or observations you have about these disorders (eg. how to go forward helping Canadians with mastocytosis and mast cell disorders in general).
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Re: Member comments about this board « Reply #1 on May 22, 2008, 5:38pm »
To whom it may concern: Although this board was started for Canadians to give help to one another and to provide information and answers, I am not Canadian. I live in Brazil and where I live, there is no help or support whatsoever for the patient with mastocytosis or any of the mast activation disorders beyond their own doctors. I have been greatly encouraged by this board and the interaction of patients trying to find answers and understand to their illness and the way their bodies react. I have found that there is a high degree of encouragement and support and that there is no negative input amongst the patients. Carrie, the administrator of this board has been extremely encouraging and helpful and has a very good a practical understanding of what she and we are going through. Not only that, there is excellent information posted as to the different forms of the disease and new findings regarding it as well as medications and means of dealing with all of the symptoms. I would encourage anyone out there, needing to find help and understanding to join the boards, especially if you are needing help and support. Although this board was raised with the intention to help Canadians, which I fully agree with and encourage. This is the only effort that I know of within Canada to help Canadians find help. I am grateful to Carrie, that she has allowed me to find help with these boards. I, as a foreigner, have been able to find the support and knowledge that I have needed. It has helped me to find answers and to work towards my diagnosis, that I am sure I would not have been able to without the help of this site. It gives me encouragement and the hope to reach out to the people of Brazil and try to meet their needs for help, support and understanding of this very confusion and complicated illness.
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