The story of Alejandra
My name is Alejandra. I’m a kindergarten teacher, living in Mexico City, Mexico. I was diagnosed with hypereosinophilic syndrome (HES) in 1998.
My symptoms started 13 years ago. Initially I had itching on my torso, but quickly started to feel tired, breathless, and had heart and lung pain. In what seemed unrelated, I started to feel discomfort in my feet. They were swollen and it was as if they were burning.
An initial exam of my lungs showed some strange moving lesions which appeared to be related to parasites. My feet continued to bother me and I could no longer feel my legs from the knee down. Some skin lesions started to appear. They looked like chickenpox on my torso, vasculitis on the face, and a trail of insect bites around my calf. I went to see a dermatologist, who was baffled by the lesions, but didn’t think they were a serious condition because the symptoms didn’t match to those of an infection, and he didn’t think the heart pain was related.
A blood test showed that my eosinophil count was 79,000. Tests to check for lupus, vasculitis, scleroderma, parasites, and more were ordered, but all showed up negative. Some tests were even sent to the U.S., however at that time no one could explain my symptoms.
Over the next few months I was feeling worse and worse: chest pain, fatigue, general sickness, awful pain in my abdomen, joint pain and bruises all over my body, and I couldn’t even walk. I had lost several pounds and could barely eat.
In the hospital, doctors prescribed IV steroids to calm down the pain and to see if that would help with eosinophil count. And it did! I was finally diagnosed with HES.
Looking for information about my condition I came across Rarr Disease Day page on Facebook and was really surprised by all the work the organization has been doing for Rare Diseases. I have seen the HES community growing. Although I live in Mexico, I have participated in Rare Disease Day for at least Five years. I use the frames for social media you design for this propuse. I make hot pink ribbons (it’s the HES color ) to share with family, friends and all those who ask about the meaning of them. I also wear my special pink bracelet made for this purpose.
I am glad to be able to contribute my experience to support others with HES!!