Skip to main content

Posts

Showing posts from January, 2011

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 ar…
Promote National Porphyria Awareness Week: April , 16-23 , 2011


Lifting and carrying my daughter was also often difficult for me. Peculiarly, I only had trouble picking her up when my undiagnosed malady was inanactive state. Lelia was not a heavy child, but she was still more than I could handle without feeling overloaded. During my ill periods, myarms felt like lead pipes; heavy and stiff. My wrists ached with the slightest movement, and my hands were extremelyweak and lacked dexterity. To halt atrophy developing in my muscles, I worked on maintaining my strength byexercising each day even if I had to move my legs and arms in the bed. Sustaining my health for the long term was often overwhelming, but I tried to continue my efforts even if I only could manage to do a few minutes of exercise each day.
On the otherhand, I could be amazingly strong during my intermittent well periods. Being able to move furniture around the house some weeks and having difficulty lifting my child at ot…