Amanda Norton

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)

 

Ever since I can remember I had some kind of stomach pain. Because of that, I have had numerous abdominal operations. Now, I am not even sure that I needed those operations. One was a complete abdominal hysterectomy! That I now regret.

Two years ago my world became completely upside down. I woke one day and my vision was blurred. It stayed that way for about 2 months. I went to every kind of doctor I could find. Finally, a neurologist told me that it sounded like I had a very strange disorder. She then tested my urine and sure enough she was right. I had (AIP). But she told me that she could not help me and that I should see an oncologist. This began my struggle to understand what was happening to my body.

Finally, after two years of hell, I found a regular doctor that listens and treats me. I just got out of the hospital from a 3 week stay. I am currently employed but can't work right now because my body is exhausted from this attack. This last attack shut down my small bowel, intestines, bladder and a section of by stomach that would not digest. (I still have digestion problems.) I still have to take pain pills for this phantom pain. Also, my personality changes dramatically when I am in an attack.

At times, I become paranoid and irrational. I believe doctors and my family don't really believe I am sick. Unfortuantley, this is how messed up my thoughts get. During attacks I also cannot remember how to do the simplest things and have gotten lost in my town that I have been many times. Does this sound familiar to any of you?

I hope for a cure one day so I can be myself again! God Bless.