Deb & James True

Married to an Ironman

Debra True was once a very athletic young woman. She and her husband, James, shared a love of the outdoors and a sport-filled life until Deb began to experience a variety of medical problems. She had endured abdominal pain since she was a youngster but began to have several other vague health problems as a young adult. No matter how many times she went to the doctor, they could not figure out what was causing her varied symptoms.

When she did have these strange attacks, she not only suffered with the very intense abdominal pain that flared up often, but she had the strange feeling that her legs were not attached to her body. They felt as if they simply were not there. Over time, both symptoms became severe enough to warrant a diagnosis, but as is typical for Porphyria patients, she could not find anyone who could diagnose her. Then, after years of pain, her symptoms disappeared, and she had what she calls “a six year remission.”

Unfortunately, the remission ended after her daughter’s birth. This time, the symptoms returned with a vengeance. And once again, they were intermittent, which complicated getting a diagnosis. Then Deb became pregnant with her second child. After the birth, the undiagnosed illness intensified, and she suffered for seven more years. At times, was wheelchair bound. Eventually, her dentist mentioned that she might have an acute Porphyria, and his hunch was correct, Deb was diagnosed with Hereditary Coproporphyria (HCP). She soon discovered that other patients in her area had acute Porphyria as well. Instead of having a support group meeting to discuss their cases, they sometimes meet at their local hospital where they have Panhematin infusions together. Theirs certainly ranks number one as the most interesting support network.

Deb's husband, James, has always been very supportive. In June, he will participate in the Ironman Triathalon in Coeur d'Alene, Idaho to raise money for the APF through the Janus Charity Challenge. Of his decision to take on this challenge, James writes:

I've watched Debra battle this disease every day and not give up. She has days when she's unable to get out of bed because the pain is so severe. Our two kids, Ryan and Amy, have watched their mother battle through her severe pain. Even when she is having an extreme attack, she tries to take care of all their needs.

Debra is always trying to help others, too, and puts her own needs last. I admire her for her strength because I know that she is suffering every day of her life. As her husband, there isn't anything that I can do to relieve her of her pain. But I can help in another way. On June 21, 2009 I will compete in the 2009 Coeur D'Alene Ironman. I am going to raise funds for The AMERICAN PORPHYRIA FOUNDATION, an incredible nonprofit organization that fights for a cure and treatment for porphyria. Every day, porphyria patients battle to beat this disease.

On June 21st my battle will be a 2.4mi swim, 112mi bike and a 26.2mi run. My battle will end at the finish line but their battle will continue. With your help we can increase awareness and research for a cure. Please help however you can.