Design Cookbook
June 27, 2012

After 30 Years Brother Gets Diagnosed with WHIM Syndrome

“I think I know what you have.” Those words spoken by Dr. Wendell Richmond at Hinsdale Hospital in Chicago in 2006 changed everything for my brother Daven. For the better part of his 30 years, Daven had been sick, sometimes for weeks at a time, in and out of hospitals for symptoms including extreme fatigue/low white blood cell count, lung infections, pneumonia, joint pain and recurring viral warts all over his body. But, he never knew why.

He had seemingly undergone every possible test multiple times and was even told he had leukemia at one point and would need a bone marrow transplant. The diagnosis was eventually reversed.

So when Dr. Richmond, an asthma and allergy specialist, told us that researchers at New York’s Mount Sinai Medical Center had identified a gene linked to a rare disorder called WHIM Syndrome, which appeared to explain Daven’s illness, we couldn’t wait to find out more…

Read my full blog post on The Global Genes Project website.

The Global Genes Project is a worldwide awareness movement created by Team R.A.R.E. and is designed to promote the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations.

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