Tuesday, July 1, 2014

About Porphyria!

About Porphyria!

Porphyria touches people of all ages, races, and incomes.  There may be one who suffers from Porphyria in your state, or even closer.  One thing I really appreciated was hosting an IN TOUCH meeting from the APF, they did most of the leg work for us.  I teamed up with another member who I had never met that had AIP, we discussed a central location, date time and place.  (Hint, if it's a smaller gathering check out at a hospital  setting- meeting room, if you explain what you want to discuss you have extras show up such as Nurses and Doctors) this is really a great way to explore the field of rare disease.  The American Porphyria Foundation sent out invitations to all those in the surrounding area and we had over 30+ people show up.  We supplied bottled water, tea, coffee and some fruit and a small cake and cookies nothing fancy.  I was able to spend time learning about others types of Porphyria and how it has affected their life.  Some who even ask me to share my story and I did. Its so important to learn for self, a loved one and also educate by the printed pages that the APF sent out to us in advance, brochures, letters, pictures of the staff and Doctors and this was at no cost.  So that is why I became a member of the APF they have helped me personally so many times.  So back to my story, There are no rules when talking with a person who has porphyria because each person and situation is unique.  So I really encourage each one to think about not only becoming a member of the APF but also hosting and getting in touch, in person with a fellow friend that shares this same disease.  THE APF SUPPORTS US!  Lets show our support back so please give them a call if you would like to host or come to an IN TOUCH meeting or become AN APF member today! 1-866-APF-3635

Next week learn more on the types of Porphyria!
"Remember....Research is the key to your cure!"

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