Hazel Crest woman brings awareness to rare genetic disease

HAZEL CREST (WBBM NEWSRADIO) - A woman from Hazel Crest is trying to spread the word about hereditary ATTR (hATTR) amyloidosis, a condition which disproportionately affects Black Americans.

Giselle, who herself is battling hATTR amyloidosis, has started a Facebook group to bring awareness about disease.

“[The] community is broad, it’s large, but we haven’t connected…I definitely wanted to make that connection with as many people as I can, so that we can have our own community and share with each other,” Giselle said.

Hereditary ATTR, otherwise known as hATTR amyloidosis, involves an abnormal buildup of protein and can have different symptoms in different people. Thus, it’s often hard to diagnose.

Giselle has been sharing her story as part of Alnylam Pharmaceuticals’ Family Health History Road Trip program . It follows genealogist and health educator Bernice Bennett as she travels across the country to meet with members of the ATTR community.

Giselle encourages everyone to ask their relatives about their health history.

“It is necessary to get the awareness out there so people can get tested, and, if I can reach as many people as possible, then I would be a happy camper,” Giselle said.

Editor's Note: In an earlier version of this article, Giselle's name was misspelled. It has since been corrected. WBBM Newsradio regrets the error.

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