American Porphyria Foundation Purple Light Blog

I am sharing a bit of my struggles to get diagnosed because most people with the acute porphyrias spend years trying to get a correct diagnosis and then subsequent treatment. So for a few more blogs, I would like to just continue telling you a very shortened version of "misdiagnosis adventure." It is my hope that you will share some of yours as welll. There is also a 'Member Stories" section of our APF website.

To continue, I became pregnant with twins and once again endured such attacks that I eventually lost my twin girls. Interstingly, women who have acute pophyrias and get pregnant have two different responses. Many feel GREAT. Some of them have told me that they felt better pregnant that non pregrant. Others have the reverse situation. Either way, they can have treatment if an attack occurs.

In my case, I didnt know I had porphyria , so I didnt' have a treatment option, so I lost my twins. Along with dealing with grief over the loss of my lit…

Fortunately, I had then and continue to maintain a great respect for doctors and other members of the medical profession. Somehow, I understood implicitly that there was a missing key to help them diagnose my condition. With that in mind, when I felt better , I returned to my studies and active life as a high school senior and refrained from harboring resentment toward the physicians overseeing my case.

Periodically, during my early college years, I had similar occurrences of the elusive pain and intense weakness. These episodes were bearable and lifted after a week or two as unexpectedly as they appeared. On the occasions that I did have symptoms of the mysterious illness, I incurred the same problems as I previously had experienced. Despite heroic attempts to diagnose me, the physicians could not find anything wrong on their standard lab tests; thus I was once again perceived as a young woman who exaggerated her medical condition.

The next few years were intermittently healthy on…