Letter from Brian Gamley

Around the beginning of January, 1990, I was fortunate to catch a C.B.C. 24-Hours broadcast involving the newly formed Neutropenia Support Group. I heard families and a doctor talking about the disease I had been diagnosed as having - Neutropenia - because it is a rare blood disease with few known sufferers, I called the C.B.C. and they referred me to Dr. Gerrard who in turn referred me to the group.

The story doesn’t start there, however. It started when I was roughly 12-13 years old. I had a multitude of oral and rectal canker sores, colds developing into pneumonia, gum infections and blood infections which were brought upon by something as tiny as a scrape. Now, at the age of 37, after seeing a total of 17 doctors, including general practitioners, internists, surgeons, dermatologists, neurologists, immunologists, hematologists, dentists, and denturists; after a wide assortment of medicines, many of them with harmful and dangerous side effects, after rectal surgery and after having all of my teeth removed, I was referred to the Mayo Clinic. There, they diagnosed Neutropenia in January, 1988. They told me at that time there were only five known cases in North America.

Under the monitoring of a Manitoba haematologist, I have been getting by - taking two types of medicine to keep the infections down. While that may be okay to some, one of the medicines is prednisone known to have severe long-term side effects; the other can cause liver damage.

After seeing the C.B.C. broadcast though, and attending the Neutropenia Support Association meetings (now a registered charitable organization), I have new hope. There is research being done at the Children’s Hospital in Winnipeg-specifically in research on neutrophils. Dr. Gerrard, although a pediatrician, has taken an active interest in Neutropenia and has been helping me with my case. We have news of a new drug being tested and soon to be approved in the U.S.; a drug called GCSF and another similar GM-CSF, which will help neutropenics develop their own neutrophils which their own bone marrow cannot seem to do. But equally important, this same drug may ultimately help cancer and Aids patients in that this medicine may bolster the immune system.

So there is hope and what is more, there are more sufferers out there with Neutropenia - it is very often misdiagnosed and mistreated, as in my case. The medical community must be made aware of the symptoms and, hopefully soon, the proper treatment will be approved and implemented. The general public could become enlightened through education. If I had not watched C.B.C. and caught that broadcast, I would never know what I know today.