http://www.bhdsyndrome.org/forum/bhd-research-blog/rare-disease-in-general-practice-bhd-diagnosis-and-management-guidelines/ Research and Support Fri, 10 Feb 2012 09:25:02 +0000 hourly 1 http://wordpress.org/?v=3.1.4 http://www.bhdsyndrome.org/forum/bhd-research-blog/rare-disease-in-general-practice-bhd-diagnosis-and-management-guidelines/comment-page-1/#comment-229 Philanthropist Fri, 18 Feb 2011 12:53:02 +0000 http://www.bhdsyndrome.org/?p=1532#comment-229 It took about 12 years and at least that many doctors to get a diagnosis of mastocytosis. Now that I know what I have, I discovered the Mastocytosis Society, and even attended their annual conference this year. If you have a rare disease, you have to advocate for yourself. You have to search for the right doctors, and try different meds until you find the ones that work for you. This experience has changed my attitude toward the professional community. I no longer look upon my doctors as demi-Gods who are all-knowing and all-powerful. They are human beings with specialized sets of knowledge. They can best treat what they see most often, and that excludes us. So, if you are searching for that diagnosis, don’t give up. Get yourself to doctors affiliated with teaching hospitals. Once you get that diagnosis, look for support groups and specialists who are on the cutting edge of research. The internet is your best friend in this respect. But do not give up. You will be frustrated. You will be doubted and questioned. You will be misdiagnosed by doctors who don’t know any better. But it’s your body, and you are responsible for getting the help it needs. These rare diseases often change lives in that they must be taken into primary consideration when doing simple things like planning a meal or a vacation. Your rare disease may prevent you from doing things you used to enjoy, but life is about adjusting. What doesn’t kill you makes you stronger. Frances. It took about 12 years and at least that many doctors to get a diagnosis of mastocytosis. Now that I know what I have, I discovered the Mastocytosis Society, and even attended their annual conference this year. If you have a rare disease, you have to advocate for yourself. You have to search for the right doctors, and try different meds until you find the ones that work for you. This experience has changed my attitude toward the professional community. I no longer look upon my doctors as demi-Gods who are all-knowing and all-powerful. They are human beings with specialized sets of knowledge. They can best treat what they see most often, and that excludes us. So, if you are searching for that diagnosis, don’t give up. Get yourself to doctors affiliated with teaching hospitals. Once you get that diagnosis, look for support groups and specialists who are on the cutting edge of research. The internet is your best friend in this respect. But do not give up. You will be frustrated. You will be doubted and questioned. You will be misdiagnosed by doctors who don’t know any better. But it’s your body, and you are responsible for getting the help it needs. These rare diseases often change lives in that they must be taken into primary consideration when doing simple things like planning a meal or a vacation. Your rare disease may prevent you from doing things you used to enjoy, but life is about adjusting. What doesn’t kill you makes you stronger.
Frances.

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