Hi my name is Amanda Rich.
I have acute Intermittent Porphyria or AIP. I found out in 2011 that I have it. Growing up I would have intense abdominal pain, joint pain, nausea, vomiting, mood irritability and always re week before and the week of my menstrual cycle. Now it makes sense. I ended up going to the e.r. with abdominal pain and I found out it was ischemic colitis. Well the medicine they gave me to treat it almost killed me. I then ended up in ICU for 9 days. While there I had to have a catheter place and the nurses started freaking because my urine was orange/purple. They didn't know what to do so I had my husband get my bio mom's autopsy report explaining AIP The hospital then collected urine and sent it to the mayo clinic. Low and behold it came back positive for extremely high PBG levels and positive for AIP. I was referred to my local cancer center that has an AIP specialist. Fast forward to 2013, I had a port a cath place in my chest in July and everything seemed good. Or so I thought. My body rejected the port in August and I ended up becoming septic and was admitted to the hospital. Long story short I almost died 4 times that month. (The sepsis, anaphylaxis from mushrooms, kidney damage and renal failure from vancomycin, and then I got a DVT in my arm.) All while in hospital I was getting panhematin, which was a lifesaver to curb my attacks. Then in Dec 2013 I volunteered for a research study and I went to NYC. I have also done other studies where they come to me and draw labs. I also just had my second port placed in august of 2014 and no problems yet. Despite it all I have a positive attitude due to my amazing family, friends and support team. Everyone that I have met through Facebook, the APF, and re groups have been there for us and we are grateful. Right now my two yr. old is showing signs of AIP so we had her tested and she has the same mutation. I know now what to do for her.
Thank you for reading my story and one day there will be a cure for all of us.