Skip to main content


Showing posts from November, 2010

The Beginning.

I was only seventeen years old when I suffered my first attack of porphyria. The attack commenced with mild pain in my lower abdomen and quickly intensified to the unbearable point. When my parents realized that this was no normal illness, they raced me to the nearest emergency room. By the time we arrived, I was so ill that I had to be helped from the car into the clinic and was placed ahead of the other patients as the number one patient on their triage list.
The physician and several nurses rushed to my cubicle and initiated an emergency examination. After the doctor determined that I was not dying, he began taking the perfunctory medical history. I tearfully whispered that I was in far too much pain to respond to his lengthy list of questions. He was quite sympathetic and asked if I could at least describe my symptoms. I was embarrassed to sound like a melodramatic teenager, but I proceeded by telling him that my pain felt as if someone had pierced me with a thousand flamin…

The APF welcomes YOU

The American Porphyria Foundation ( APF) welcomes you to our new blog, Purple Light . The APF website is an educational explosion of information. The Blog will be the place where we weave pertinent information within the context of a human interest stories, yours and mine.

My name is Desiree Lyon Howe. I have been with the APF since day one when the APF began as an idea of mine and my friend, Jim Young. In the early 1980's, Jim and I met through several porphyria experts, namely, Dr. Claus Pierach and Dr. Karl Anderson. Just meeting another person interested in porphyria made such an impact on both of us that we felt that starting a foundation for people to learn more about the disease from experts and have the means to communicate with one another would be an important service to others who suffered with porphyria or had it in the familyt.

We discussed the concept further and settled on a name , the APF. Then we set about creating a plan that incuded selecting a Scienti…