Letter: Learn more about genetic disorder

Imagine being told that you have a disorder for which there are few medical treatments. That is what happened to me 50 years ago, when I was first diagnosed with neurofibromatosis (NF).

NF is a genetic disorder that can cause tumors to grow along nerve cells and can result in disfigurement, blindness, deafness, learning disabilities, skeletal abnormalities, disabling pain and cancer. It affects approximately 1 in 3,000 people - more than cystic fibrosis, Duchenne muscular dystrophy and Huntington's disease combined - yet it is underdiagnosed and underrecognized.

With no cure and few treatment options, everything felt hopeless. Then I started to realize I needed to fight NF with strength, dignity and a sense of humor. I joined forces with the Children's Tumor Foundation (CTF), a medical research non-profit committed to ending NF through research. CTF believes that full-scale collaboration will lead to solutions for NF. That alliance includes not only clinicians, researchers and other experts in the field, but patients and their families, too.

May is NF Awareness Month and I invite other members of the Iowa community to fight with my family by learning more about NF at www.ctf.org

Sheila Drevyanko

Des Moines