Heather Young and Kelly Scruggs, sisters from Kenosha, Wisconsin, both tested positive for HHT after their father developed red spots on his face and was diagnosed with HHT. Then Kelly’s three daughters and Heather’s son and two daughters all were diagnosed as well, highlighting the importance of having all family members tested.
“Our whole family now is helping to spread Awareness of HHT,” Heather says, “We have made sure that school nurses are informed, and have given information to local hospitals. Sometimes when we warn other families about nosebleeds their kids are having, they still don’t act, but unless you rule it out you are taking a big risk.”
Heather’s three children: Jamisen, 17; Jordyn, 14; and Jayda, 10, are all engaged in promoting awareness of HHT. Every June, they host fundraisers on social media, and come up with unique ways to help spread awareness in their community. This year, Jordyn is even planning an HHT float in the July 4th Kenosha parade!
How You Can Increase Awareness of HHT
Talk to your Healthcare Providers about HHT
HHT symptoms are often mistaken for other conditions - knowing the common misdiagnoses can lead to faster identification and significant improvements in quality of life. Download this comprehensive fact sheet to share with your physician, who may not be familiar with HHT, to provide a roadmap for a better understanding of this disease.
Cure HHT hosts several educational events and community building opportunities each year!
Some of these events include regional educational conferences for both patients and physicians, and family walks. Additionally, we offer free educational materials in our extensive Resource Library.
Share Your Story
Sharing your HHT story strengthens and empowers our community.
It can make all the difference to know you’re not alone when living with a rare disease like HHT.