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Susana Isla

Mexico:
A Global Partner
Susana Isla is our contact for Mexico, our new Global Partner.  We welcome her and thank her for volunteering to assist us with our partner support program.  If you would like to communicate with Susana, contact the APF.

My name is Susana Isla, and I live in Mexico.  From the time I was five years old until I was forty-two, I have had a severe itching that never stopped. I thought it was psoriasis.  After I learned about porphyria, I realized that it was not psoriasis. Aside from horrible itching, it also bled and was scaly, particularly after I went to the beach or some sunny activity. My skin looked as if I had leprosy and was very painful all the time. It was so intolerable that during the night I would have to take off all my clothes.   I have never been able to tolerate heat on my body like a normal person, but I did not know why and neither did the doctors. 

I also suffered insomnia, so I went to a sleeping clinic.  No one at the clinic knew what was wrong either.  I also had constipation so severe that I endured major bowel obstruction.  In addition, I was hospitalized several times after I drank alcohol.   These were all clues that might point to a porphyria diagnosis.  I had repeated tests, including blood tests, but none of my doctors thought about porphyria.  Regardless of the many tests, the doctors could not come up with an answer. This is what happened to me even among specialists until one doctor finally discovered I had porphyria.

Thanks a lot APF for caring and for helping people with this disease.  I am not yet too knowledgeable.  It is so new to me, but I will study and try to help others learn about it.  I have even contacted every one that has treated me so that when they have a patient like me they will know what to do instead of sending them back home without a diagnosis and the wrong medicine.   I will be glad to start raising the consciousness about porphyria in Mexico.