Skip to main content

Sign UP its free, Lifesaving. Porphyria Invite.



I wanted to take a few moments to suggest signing up for these groups.  These groups are designed for you at no cost.  

When you sign up for the http://rarediseasesnetwork.epi.usf.edu/porphyrias/index.htm you are signing up to participate in research projects answering questions about your type of Porphyria, you have questions, your chance to support these programs for possible medications and cures are so necessary.  These are great Expert Doctors that are interested in learning about you and your family.  Sometimes it’s a simple process of answering questions, a phone call, a trial drug, or a blood  & urine sample!  So please sign up and explore this site.

Next we have the http://porphyriafoundation.blogspot.com.  This is supported by the American Porphyria Foundation.  It is also free to join.  Learn  about upcoming events, read members stories, be encouraged that you are not alone.  Try a recipe, learn some tips from the Experts.  Be INVOLVED!

Do you enjoy interacting with other patients, doctors from all over the world that also have Porphyria?  I know I do.   When you sign up for free to a program called: RareConnect~https://www.rareconnect.org/en you can find diagnosed Patients with all types of people all over the world, new and exciting news, learning opportunities, announcements, how medicine and trials are making progress, start discussions get answers. Learn how Porphyria affects each one of us.

So what are you waiting for, please join your support, experiences and encouragement are what we all need.  Please show your support for such programs they may not always be available to us.

Remember.....Research is the key to your cure!

Comments

Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF 
The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…