Giving locks to help unlock secrets to rare disorder

HUNTERSVILLE, N.C. — A Huntersville woman has been growing her hair for three years without cutting it for a reason, and last Saturday she accomplished her objective, having it cut to benefit Locks of Love while simultaneously raising awareness and money to support American Partnership for Eosinophilic Disorders (APFED).

For years, Ginny Barton’s son, Andrew, suffered with a rare disease, eosinophilic esophagitis, that doctors first couldn’t diagnose, then couldn’t figure out how to treat. The story is common among those living with eosinophil associated diseases. These diseases are characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places in the digestive system, tissues and/or organs, which causes inflammation and damage.

To create awareness and support research of these diseases, Barton has been growing her hair to have it cut and, through e-mails and social media, has been collecting donations for each inch of hair she has cut to support APFED.

Eosinophil-associated diseases, including eosinophilic esophagitis, are rapidly emerging as a health care problem worldwide. Yet many patients suffering from these diseases go undiagnosed for years because of the lack of information or awareness of the diseases. A diagnosis can only be made through tissue biopsies. The diseases are chronic and often debilitating, and delays in diagnosis are common. Often patients are misdiagnosed.

There is no FDA-approved treatment for most eosinophil associated diseases and there is no cure.

Donations to support Inches for EOS can be made at HYPERLINK “https://www.apfed.org” www.apfed.org. APFED is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. It strives to expand education, create awareness, and support research while promoting advocacy among its members. For more information, visit HYPERLINK “https://www.apfed.org” www.apfed.org.

– Lake Norman Citizen (source: lakenormancitizen.com)