Chicago family on a mission to educate public about deadly disease 'HHT'

CHICAGO (FOX 32 News) - A Chicago family is on a mission to educate the public about an obscure disease that impacts about one in 5-thousand people.

Symptoms can be as seemingly benign as frequent nose bleeds, only the disease can actually kill.

FOX 32's Scott Schneider introduces us to a mother and her children who are fighting ‘HHT’ and the only hospital in the state currently working to find a cure.

Kristy Kelly and her children, 13-year-old Connor and 11-year old Megan, share a bond that goes far deeper than blood; all three have been diagnosed with ‘Hereditary hemorrhagic telangiectasia’ or HHT, which is a rare and potentially fatal genetic disorder passed down from Kristy's grandfather Michael.

"I believe he was cutting the grass one day and  of course had no idea that he had this illness, and he died,” Kelly said.

HHT causes lesions or AVM's on the skin or in one or more organs that can cause excessive bleeding, as is the case with Connor and Megan.

“They have different manifestations. My son has the same as mine which is AVM's in the lung and my daughter has AVM's in her brain,” Kelly said.

Researchers at the University of Chicago Medicine Biological Science are  working to not only treat HHT, but also to educate the public.

Up to 90 percent of HHT cases are undiagnosed.

"So many patients who have this disease think they only have a nosebleed or only have the lesion on the skin and have not really been informed about all the different manifestations and have not put the whole package together,” said Dr. Issam Awad, Director of the HHT Program at The University of Chicago.

Connor and Megan were diagnosed at the same time after undergoing genetic testing. Despite a few mild symptoms that pop up occasionally, they lead completely normal lives and rely on one another for support 

“I get more nose bleeds than he does, so we talked about how it feels different for both of us,” Megan said.

“To not really be worried about it,” Connor added.

They are two great kids who are active in sports and love music, but what's most impressive about Connor and Megan, and Kristy for that matter, is that they're opening up about HHT in an effort to educate people who may be living with this disease and don't know it.

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