Because porphyria is a rare disease (defined as affecting fewer than 200,000 sufferers in the U.S.), many newly diagnosed patients have never even heard of the condition before, let alone met someone else who suffers from it. We created the APF In Touch network to meet this need.
APF membership includes access to the In Touch network, through which members can contact others around the country who are dealing with porphyria. Some members form lasting friendships via email, telephone or old-fashioned letters. Others prefer to reach out to members in their region and organize face-to-face get-togethers.
If you are seeking support and fellowship, or are willing to be there for others who are dealing with porphyria, please fill out and send in the In Touch consent form to our address below. For more information on the APF In Touch network, contact Mira at the APF office: 866-APF-3635 or 713-266-9617.
American Porphyria Foundation
4900 Woodway, Suite 780
Houston, TX 77056
What the In Touch network has done for me:
I want to share my experience with the In Touch network provided to us by the Foundation. I was diagnosed with AIP after 18 months of symptoms. You know the severe abdominal and back pains with fatigue and nausea. You all know the drill. The scariest part was the rarity of this disease. Every doctor tells you they're not that familiar with it, and very little was actually known about it. People look blankly at you when you try to explain how you feel. I don't have to elaborate to you all that also have it. So I decided to communicate with someone else that had this illness.
This was back in 2001, the time before the wonderful website that we are so blessed with now. So I opened the newsletter and looked at the names before me. I knew that I wanted someone that also had AIP. So I closed my eyes and asked God to help me chose the right one. I opened my eyes and there she was. Lori Brown from Madison, Alabama. I am from Arkansas so she was geographically close to me. I emailed her and introduced myself to her, telling her all of my experiences so far and asked if she would like to share "war stories." She emailed back and was more than happy to do just that. So over the next 7 years Lori and I battled porphyria together.
After a while Lori and I began calling each other on the telephone. Some of our conversations lasted for two hours! We discussed how the disease affected our marriages, children and our lives in general. I don't know if it was misery loves company but I can tell you she helped me so much. To have someone who understands what you are going through is great. I didn't feel alone.
On October 16, 2008 Lori Brown from Madison, Alabama passed away. The battle with porphyria is over. She is free. I never got the privilege of seeing her face or giving her a hug. But she was one of my best friends. So if you are thinking about getting in touch with someone and just haven't done it yet I encourage you to find yourself a Lori too. Find several. I have others as well: Rose, Mira, Judy, Jennifer and Troy. Or attend a meeting scheduled near you. Or reach out and host one yourself. I can assure you it will be a fulfilling experience.