Hypereosino-what??? Well, I knew something wasn't right in the Spring of 1995. My first child was only 6 months old and I just couldn't tolerate food. I liked it, but it didn't seem to like me. Everything I ate sent me to the bathroom. Unfortunately, my disorder is about things we don't normally talk about with other people, such as diarrhea and vomiting, but for me and my family it's every day language now. So, yes, I was having several bouts of diarrhea every single day. I couldn't gain weight, in fact, I was losing it. In the Summer of 1995 I only weighed 95 pounds and all I could tolerate eating was potatoes and rice.
Time passed and I seemed to be getting better. I started gaining some weight back and wasn't in the bathroom as much, but that was short lived. I went through a time in the early 2000's where I would just get sick, felt nauseated, sometimes vomit and have chronic diarrhea for no apparent reason. My stomach felt horrible all the time. There were days that I could hardly take care of my kids (two children now). There were days that I literally was in the bathroom for hours.
I went to several doctors that just didn't seem to know what to do with me. It was very frustrating for me because I didn't feel like I was getting help. I knew something wasn't right, but I'm not a doctor, I didn't know what it was.
In 2001 I started developing a rash on my arm. It looked a bit like eczema. The rash over the next four years got worse and spread to other parts of my body including my face. My dermatologist saw my rash on my face for the first time in the summer of 2004. He was very concerned and thought I might have lupus. He had some blood drawn and ran some tests. He knew something was wrong when my white blood count came back incredibly high. He guessed that I either had Lupus or Leukemia. I started seeing a Hemotologist right away.
In the mean time, my stomach was acting up again. I had horrible pain. It was advised that I have an Upper GI. This test showed that I had a large stomach ulcer. The GI doctor biopsied it and found high counts of Eosinophils (part of the white blood cells) in my stomach tissue. He guessed that I had something called Hypereosinophilic Gastroenteritis. This was partyly true, but there was more symptoms that were confusing.
Finally, after 5+ years of seeing a Hemotologist, Dermatologist, Gastroenterologist and an Allergist, I was sent to Cincinnati to the Center for Eosinophilic Disordersin February of 2010. I got a diagnosis of Hypereosinophilic Syndrome.
The following blog entries tell the rest of my story...unfortunately, it's an on-going story that hasn't ended yet, but I'm hopeful for a cure.
MY STORY CONTINUED:
9/18/2009 blog entry
11/03/2009 blog entry
Trip to Cincinnati
Hypereosinophilic Syndrome
03/2010 blog entry
I-HES
Hydroxyurea
June 2010
July 1/2010
RESOURCES:
American Partnership For Eosinophilic Disorders (more info. on EOS related disorders)
Cincinnati Center For Eosinophilic Disorders (hospital in Cincinnati where I was seen)
