Tuesday, April 16, 2013

How Sarah Lee is making a buzz about Porphyria Awareness week!

Sarah Lee

This is National Porphyria Awareness Week.

Here's a link to the American Porphyria Foundation in case you are wondering what in the world is Porphyria. :) I have been diagnosed since 1997. So many of you were in HS with me while I was "getting sick". That is when I started having symptoms but I was born with it. Remember me passing out in school & leaving by ambulance, having to quit sports teams I played on with you, being missing from classes a lot, in the nurses station all the time, having rapid weight gain? It was confusing & scary. I lost many friends who had never been exposed to someone with a chronic illness before...let alone someone their own age having something they've never heard of. Some people, even those close to me, even accused me of "faking it" for attention. I do not blame them. People fear what they do not know. So this is a big reason I want to educate as many people about Porphyria as possible. I feel this applies to other things that may be unknown to the masses like other rare diseases, cancer, people with special needs or disabilities.
 Don't be afraid, if you don't know...ask instead of judging. And for those who are affected or have a loved one who is, don't be mad at others for reacting negatively...educate them instead. It our responsibility to share and talk about it even if we are afraid being received negatively and judged. It is the only way to make things better. Be strong and know that you are not alone.

Thank you Sarah Lee for sharing your personal story of what you have went through and how you have overcome  and managed Porphyria.
Remember....Research is the Key to your cure! 

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