NASHVILLE – For most people, nose bleeds are a rare and minor annoyance, easily resolved and far from life threatening. For Jennifer Davis, the seemingly harmless condition might one day mean a trip to an emergency room.
Davis suffers from an uncommon genetic condition called hereditary hemorrhagic telangiectasia (HHT). Also known as Osler-Weber-Rendu Syndrome, the illness causes the malformation of certain blood veins, and in extreme cases, can lead to nose bleeds which last hours instead of minutes and even a minor stroke.
The myriad threats are something Davis knows about first hand. A Siloam Springs native, she relocated to Nashville in 2009 to be closer to her family, many of whom also suffer from the condition which nationally affects just one in every 5,000 people.
“It’s something that we do have to stay on top of,” she said. “My dad has it, and his main thing is his nosebleeds, and he’ll have one that will last hours and have to have a blood transfusion because of it.”
Davis herself was diagnosed at 16, when low energy levels and extreme migraines prompted a checkup which revealed a mass in one of her lungs.
“It was so big, when they saw it they actually thought I had lung cancer,” she recalled during a recent interview.
But doctors weren’t detecting a tumor. What they were seeing turned out to be an arteriovenous malformation, which required surgery then and still necessitates frequent monitoring today.
“There are so many tiny areas that can’t be competely repaired because they’re so small, so they just have to monitor it for when one opens up so it doesn’t cause air bubbles to move up and cause a stroke,” she explained.
That very fear became a reality last summer, although the stroke itself was minor enough that Davis was largely unaffected. But for a mother of three, two of whose children have been diagnosed with the condition, there are more pressing concerns.
“My biggest fear is my kids developing an AVM or having severe nosebleeds where they have to have a blood transfusion,” she said.
In an effort to help create a future free of that fear, Davis is working to promote awareness about the condition, which the National Institute of Health claims is often difficult to detect due to the wide range of both symptoms and severity. On July 11, she will be participating in a fund raiser 5k walk, Grammy’s Memorial Walk for HHT, in Amity where those affected by the disease and the people who care about them can aid in the research needed to find a cure.
Event organizer Lindsey Fant said she expects a crowd of about 100 to turn out for the walk, which will be held at the Centerpoint High School track near Rosboro. The day of the event, registration will be at 5:30 p.m. and the race will begin at 7:00. Participants hoping to register prior to the event can go online to www.curehhtarkansaswalk.causevox.com/# and receive a free t-shirt. Registration is free, but Fant asks that participants make a small donation to assist in finding a cure for HHT.
Fant, whose mother struggled with the disease, said she hopes to have bounce houses and games for kids as well as a guest speaker present at the event. Fant said, “I would like to encourage everyone to come out and enjoy the event in memory of Tammy Waldrum and help spread the awareness of HHT.”
