Local family raising awareness about blood disorder

Local family raising awareness about blood disorder

Chronic nosebleeds could be a sign of a much deeper problem. A genetic blood disorder known as HHT is estimated to affect about one in 5,000 people, but most are unaware.

Leonard Hanks of Ragley has Hereditary Hemorrhagic Telangiectasia and so do many of his family members.  7News spoke with several of them at LifeShare Blood Center in Lake Charles about why they are passionate when it comes to raising awareness of HHT.

HHT is a genetic blood disorder that causes abnormal blood vessels that are fragile and burst easily.  One of the most common ways it rears its ugly head is through nosebleeds.  "You have nosebleeds and then you bleed from the stomach and your GI tract, then spots on the face," said Leonard, "I have a couple of spots, they'll rupture."

Leonard lived 52 of his 56 years without a diagnosis, bleeding for decades, until a genetic test four years ago pinpointed the problem as HHT.  "I've been bleeding since I was like 8, 9 years old and it would come and go through life until you get older. The older you get, the worst it gets," he said.

Tayton Hanks is just eight years old and has the disorder, along with two of his brothers.  "Whenever I don't know it, blood just starts coming out of my nose and then it drips all over the floor," he said, "and I have to go to the bathroom."

If a parent is a carrier, there is a fifty percent chance it will be passed on the child.

After living with the effects of HHT in his own family, Leonard knew action had to be taken to raise awareness.  "Seeing so many of my family members pass away because of this at an early age and to see so many of my younger people that have it," he said, "I have to do something."

Patients with more advanced forms of HHT need multiple blood transfusions each month, getting pints of life-saving blood.  LifeShare Donor Resource Coordinator, Kristi Morris said, "They have to go in very regularly because there's no way to stop the bleeding that they have internally."

There is no cure for HHT, but with a diagnosis and monitoring, patients can live long and healthy lives. But, that doesn't come without help from people that can give blood to help patients like Leonard and Tayton.  "I would say please help me, because I might not have enough blood to survive," said Tayton.

Tayton and his siblings do not need blood transfusions at this point, but Leonard does. He also has an enlarged heart because of HHT and is on the waiting list for a new heart.

If you would like to donate blood in honor of HHT Awareness Month, LifeShare will have its bus at Prien Lake Mall this Saturday from 11:00 a.m. until 4:00 p.m.

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