Hypereosinophilic Syndrome

Photo of Hypereosinophilic Syndrome

The phone rang this morning and to my surprise it was Dr. von Tiehl from Cincinnati Hospital. He had the lab results from all my blood work and gave me the results. They tested me for EVERYTHING that one could ever been tested for....all cancers, HIV, leukaemia's, autoimmune disorders, allergies, parasites...everything turned out negative. That was good news.

With all of those tests and looking at my past medical history it was concluded that I have Hypereosinophilic Syndrome (HES). This is what I thought I had. I'm not a bit surprised.

This is an EXTREMELY rare disorder. Roughly 1 in every 200,000 people have HES. That's about 150 people in the entire United States of America! It is not curable, but there are treatment options. Things are still being learned about this disorder and treatments are still being researched. It's hard to explain the disorder so if you'd like to learn more you can go these websites...

http://www.aaaai.org/patients/gallery/hypereosinophilic_syndrome.asp

or http://www.apfed.org/hes.htm

or http://emedicine.medscape.com/article/202030-overview

orhttp://hypereosinophilia.info/FAQs.htm

or http://www.cincinnatichildrens.org/svc/alpha/e/eosinophilic/about/default.htm
As far as my treatment goes I won't know what we'll do for a few more weeks. We're waiting on some test results to get in before we decide the best treatment plan. I'll also have an EKG and an Echo cardiogram on Feb. 23rd to determine if any heart damage has been done and the extent of that damage. Treatment all hinders on these results along with the biopies of my GI tract that were done in Cincinnati. In a few weeks I'll update my blog and let you know what treatment options we decide.