Wednesday, June 10, 2015

Natalia Nikova Summer Vacation and AIP

It's summer time have you taken a vacation yet? Please read the reminders off a new personal experience from Natalia Nikova

Acute Intermittent Porphyria

Beware of Mountains
My name is Natalia Nikova.  I was born in Russia in St. Petersburg.  I have AIP.
I went through horrible surgeries and sufferings in Russia before I was properly diagnosed.  That happened when I was between 25 and 30 years old.
After that I was receiving capsules of Adenil through the Red Cross for about four years and injecting myself two times a day.  My recovery was very slow but at the age of 39 I started to feel better and I was able to immigrate to the USA with my daughter and my mother.
I managed to change my profession from Choral conductor to a computer programmer to support my family and my porphyria's symptoms almost disappeared. Now I am 63 years old and in August 2004 all of a sudden I had a reminder. I and my husband went to Peru.  I got immediately sick in Cusco from the high altitude but the altitude sickness was greatly aggravated by porphyria. In addition to a headache and shortness of breath I had nausea, high fever, high blood pressure and grazing pain in my stomach. In fact I became so sick that we had to change our entire itinerary and move to lower regions in Peru.  That was not too much fun because I am a bird watcher I was looking forward to go to Colca Canyon to see Andean Condor.  Even after we returned from Peru I was sick for two weeks with general weakness.
I hope that sharing this story will help some people in planning their vacation.
                      "Remember....Research is the key to your cure!"

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