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…
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…