I Have Hypereosinophilic Syndrome

A Hypereosinophilic Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Hypereosinophilic Syndrome. You're not alone. 10 People

    BACK IN 2010, I WENT INTO THE EMERGENCY ROOM

    BECAUSE I WAS WAKING UP WITH COLD SWEATS AT NIGHT, HAVING TROUBLE SWALLOWING FOOD, AND HAD A LUMP ON MY INNER THY THE SIZE OF A MANGO. I WAS ADMITTED THE SAME DAY. THE NEXT DAY I WOKE UP TO GO TO THE BATHROOM AND COLLAPSED ON THE FLOOR NOT BEING ABLE TO BREATH AND WAS RUSHED...
    DARINALLBAUGH DARINALLBAUGH
    36-40
    Dec 18, 2013

    I was diagnosed with HES about three months ago.

    Started on 40 mg a day of prednisone and started feeling much better after about a week. Stayed on 40 mg for a month then dropped to 20 mg for two weeks. Started feeling kind of crummy and eos started going up again. Went back up to 30 mg. Then, I luckily found an HES specialist...
    kpsue kpsue
    56-60, F
    1 Response Aug 10, 2015

    My Life With Hypereosinphillic Syndrome

    I have had it 8 years now, i am a very young 50 and probably over the top at times due to the large amounts of steroids i have had for a long time with other drugs , the reason im up at this time as have had a bad episode for 7 days now steroids up so hence been awake all night...
    ruby19 ruby19
    46-50, F
    2 Responses Dec 5, 2012

    I Have Hypereosinophilia Syndrome.

    Hello. I was diagnosed with HES about 1 month ago. Thought I had the flu but go figure, it's HES. I am looking for advice and interaction from others like me who have this rare disease. I am one of the rare females with HES and 63 years. I am active. Love to shop and work...
    JAR63 JAR63
    61-65, F
    1 Response Feb 16, 2013

    Does It Get Better?

    After about nine months of having various tests, scans and X-rays I have recently been diagnosed with HES. I have been put on steroids which initially lowered my eosinophils but as these have been reduced my levels have gone up so the steroids have been raised. I'm having awful...
    Suzysue Suzysue
    51-55, F
    1 Response Oct 17, 2013
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