My name is Alejandra Islas. I’m a kindergarten teacher, living in Mexico City, Mexico. I was diagnosed with Hypereosinophilic Syndrome (HES), in 1998, at a time when medical databases showed only six cases with symptoms similar to mine, and with a life expectancy of 6 months.

My symptoms started 13 years ago, while on vacation in Argentina.  Initially, I had itching on my torso, but quickly started to feel tired, breathless and have heart and lung pain.  In what seemed unrelated, I started to feel utter discomfort in my feet. It was as if they were burning, got swollen and I could barely walk on my own.

An initial TAC and x-ray of my lungs showed some strange moving lesions which appeared to be related to parasites.  Also my feet continued to bother me and I wasn’t feeling my legs from the knee to the bottom anymore and some skin lesions started to appear… they looked like chickenpox or scarlatina 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 them 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.

Luckily, my father and brother had worked in the pharmaceutical industry, they knew blood tests could reveal something still undetected.  A blood test showed that my EOS count was 79,000 (when the upper limit was 6,000).  Tests to check for lupus, vasculitis, scleroderma, parasites and more were ordered, but all showed up negative.  Some tests were even sent to the US to the CDC in Atlanta, GA, however at that time no one could determine an explanation for my symptoms.

Over the next few months I was feeling worse and worse. Chest pain, tiredness, general sickness, awful pain in my abdomen, joint pain and hot bruises all over my body, and I couldn’t even walk anymore.  I had lost several pounds and now I could barely eat…. my body started to reject all food.

In the hospital, doctors prescribed four steroids to at least calm down the pain and to see if that would help with the hypereosinophilia, and it did!  And I was finally diagnosed with HES.  I am currently treated with a low dose of inhaled beclomethasone, although recently it has become really hard to find around the world.

I have a strong faith and I am certain God performed a miracle where my physicians, all of them at Medica Sur Hospital, in Mexico City, have been His instruments. And of course, I also thank God for my family, without it wouldn’t be possible for me to be here today.

Although I live in Mexico, I wear jeans and made denim ribbons to share with family, friends and all those who ask about the meaning of them. I also wear my special bracelet made for this purpose. I am glad to be able to contribute my experience and advice to support others with HES!!

Thank you and God bless you all!!

Alejandra Islas
Mexico City, DF

7 thoughts on “Hypereosinophilic Syndrome (HES) – My Strong Faith Helps Me Remain Hopeful”

  1. Peter says:

    Have HES since 2012. Seems to be under control with Gleevec. But the joint and abdomen pain are hard to deal with. How are you doing now?
    Pete
    New York

  2. Vicky says:

    Hello everyone.

    My brother was diagnosed last year with HES. I don’t know much about this. I need to find out more so i can help him. I would like to hear your experiences. If anyone is open for further communication please reply.
    Thanks in advance
    Vicky

  3. Tea says:

    Hi, your story gives me a lot of insight and support at a time when no one where I am seems to know what HES is or whether or not I even have it. If possible, could we speak about some aspects of your story? Did your eosinophil level just drop by itself? was it going up and down? how long did investigations go on until you were treated?

    The doctors around me in the UK just dont have a real knowledge of this at all, i’ve had to battle to get to even see a heamatologist who i have an appointment with next month.

  4. LULU goosen says:

    MY HUSBAND IS USING WAFREN AND DISPREN SINS 2001 AND IT WAS NEVER GET TO KNOW WHAT WAS THE PROBLEM IT WAS HES IT WAS HE WAS WORKING FELT VERRY TIERD WEEK EVERY 3 WEEKS AT THE GP and now booked of for 1j4m and his work is going to board him as from 31 march 2017 he is mutch better now that he is at home and can rest when ever he needed it all his ilness disk prolaps ,hart paser from 2007 lots of DVT ,GALBLABLUDDER,STONS 14 ,SKIN RUCH ,MAJURE DEPRESION,TIERD NESS FATTY LIVER LOUW BLUDSUGGER ,HI BLOOD PREURE BUT NOW BETTER SINS HE IS AT HOME COLESISTISE DUKDERM ,ASMA,RESLISS LEGS , COLESTROL GOUT ,AND SO THE LIST GO ON ENJOY YOU XMAS

  5. sue says:

    I was just diagnosed with this and I know absolutely nothing nothing about it. The doctor gave me a very grim future.

  6. I’ve had HES for 11 years and although I’ve had some very difficult side effects of both the disease and medication, I’m still living strong and happy!

  7. Jessica Bohall says:

    I’m from the US and I was diagnosed with Idiopathic Hypereosiniphlic Syndrome a year and a half ago. In on a chemo pills and a shot called Nucala. I also have inhalers as well as a nebulizer for breathing treatments if needed.

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