Hyper Eosinophilia Syndrome (HES)
Idiopathic Eosinophilia

We are aware there are some forms of eosinophils produced by KNOWN causes. This may make them more treatable as the condition that caused it may sometimes be treated. Such possibilities might be Valley Fever, Infectious Diseases, Allergies or Asthma. These cases CANNOT be part of our study.

The people that I have discovered so far are of the UNKNOWN cause variety. This is the area where we really need to accumulate information. So far, I have only found two other people with this "unknown cause" version of (HES). All three of us, on different treatments, of different ages and in different parts of the country. All three are female.

One of the patients I am aware of is treated now only once every three months by a combination of IV chemo as well as steroids and is functioning normally. I don't know if that cause was ever identified. Another is riding the rollercoaster of steroids and hydrea doses trying to stabilize their count. She is having a harder time with day to day activities. I have been on IntronA chemo every few days for the last two years to stabilize my count. I was unable to tolerate the steroid treatments. It has stabilized my count, however I am unable to work at this point.

As you can see, we are all different and we all had symptoms of some sort. Some folks may have a high count and have NO symptoms. That is why whatever information you can supply would be greatly appreciated. We're just going to start our own group until the doctors catch up.

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ALSO
The American Partnership
for Eosinophilic Disorders
is a non-profit advocacy organization for those living with eosinophilic esophagitis, eosinophilic gastroenteritis, eosinophilic colitis, hypereosinophilic syndrome, and other eosinophilic disorders.

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