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My First Support Group that Grew Into the APF

Like most good ideas, the American Porphyria Foundation, began out of necessity, namely I was terribly lonesome and needed someone with whom I could communicate about porphyria. When I first arrived at NIH, I was the only patient who had Porphyria on the metabolic wing. I yearned to meet someone else, so I could talk with them about their experience. Although there were a few other patients on the wing, I could not identify with their symptoms as they were so vastly different from my own. However, I could identify with their feelings of isolation and anxiety on one hand and their feelings of gratefulness for each new day.

One morning, Dr. Lamon came into my room with the news that two more Porphyria patients had arrived that morning. Valerie was an Acute Intermittent Porphyria (AIP) patient from Utah, and Maureen was a patient from Baltimore, who had Variegate Porphyria (VP). Both had been patients at NIH for treatment on several other occasions. We met within hours of their arrival at NIH. I did not feel that I should interrupt them, because I did not know if they were very ill or there for a research project. I had learned during my times in the laboratory that some patients returned to NIH to participate as volunteers for specific research projects. I was anxious to meet them whatever the case may be.

On my daily walk around the halls on our floor, I got my chance to meet them. They too were roaming the halls of the metabolic wing, and we greeted one another in passing. It did not take us long to introduce ourselves, strike up a conversation and discover that we had the diagnosis of Porphyria in common.

Rather than gab on in the middle of the hallway, we quickly searched for a quiet place to sit and discuss our respective cases. It was soul soothing to be able to compare symptoms and treatments, discuss our emotional states, share our yearning for our families and talk about the ways in which we were able to cope with our illness. Like most patients with a rare disorder, we felt as if we were the only ones in the country suffering from this rare disorder. The opportunity to meet each other and then mutually support each other was crucial to our improvement. For me, it was important to see other patients who were still alive several years after their diagnosis. Although I had read a great deal about the disease and knew that patients could live long lives after attacks, I was wary that this was not true, particularly since my symptoms were so harsh. Gladly, I had two examples of living, breathing, happy individuals to prove that it was the truth.

Valerie was the mother of several children and, like me, was depressed over not being with her offspring. We comforted one another with photos and stories about each child. Our interchanges helped both of us bear the long days without them. Valerie also had AIP like me, but she had been diagnosed for five years. This helped me considerably. I told her that she was living proof that AIP was not a degenerative disease and that a person could have a relatively normal life when the disease was not active. Mostly, I was glad to see that she was alive several years after her diagnosis.



Maureen was single and was in the process of becoming a nun. The three of us spent long hours talking about the Lord and the Bible, thus fulfilling our need to share what was happening to us spiritually, as well as physically. Those conversations were more valuable than we fully understood. By sharing many of the powerful promises in the Bible, we were empowering ourselves. Each of us was responsible for bringing a passage to our daily meeting, like “bear one another’s burdens” or “God is a very present help in time of trouble.” I had heard from years listening to sermons in church that the spoken word is very powerful but I did not understand how powerful until we began to take those words and repeat them until they became alive in our souls.

In the course of my many conversations with Valerie and Maureen, we agreed that what was needed was a patient education organization to distribute understandable information on Porphyria and act as a point of contact and support system for other patients. At that time, nothing was available in the way of patient information other than a very basic print-out that Dr. Lamon gave me and my own handwritten pamphlets. Our many discussions precipitated the thought that I might have my more comprehensive educational information for patients approved by Porphyria specialists and then used as the first brochure for a support network. This thought flickered at my mind’s edge until on the early gentlemen I met gave birth to the American Porphyria Foundation a number of years later. I hope most of you understand the importance of sharing your experience. In time, we will open the blog up to others to share their stories or comments.

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