Wednesday, February 29, 2012

Happy Rare Diseases Day!


Today is Rare Diseases Day. According to NORD, 1 in 10 people has a rare disease. I know that doesn't sound too rare, but each individual disease is.

PWS is considered a rare disease in that its incidence is estimated to be anywhere between 1 in 10,000 and 1 in 20,000 or more.

What does it mean to have a rare disease? Practically, it means...
-that a lot of people won't know what it is. That you'll spend a lot of time educating people about the disease, which is empowering, but sometimes draining. I won't speak for everyone, but I personally appreciate when people ask questions to know more.

-that a lot of pharmaceutical companies are not always interested in developing treatments for a rare disease, because their market just isn't as big as for more commonplace conditions. PWS at least has the distinction of being a complex and therefore interesting disorder, so scientists do want to study it. Also, with having a link to the health problems surrounding obesity, it's definitely relevant to our society.

-the community affected by a rare disease is often pretty tight-knit. We cling together because we have something in common that many don't have, even though the similar rare disease might affect us all differently. Having a VERY rare disease sometimes mean that people don't have a community at all. No one shares their plight, and while they might find others who have similar conditions to the one that affects them, it's not the same. I am thankful for the amazing PWS community.

Thank you for being a part of this blog and learning about a rare disease! I love hearing the stories you all write me about how knowing about PWS has helped you in understanding others with the syndrome and to empathize with others with similar conditions. Thanks. :)

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