For many people a nosebleed may be an unusual occurrence, but for others it’s a symptom of a silent and potentially serious blood vessel disorder. Approximately one in 5,000 people have Hereditary Hemorrhagic Telangiectasia (HHT) but it is estimated that 90 percent are undiagnosed. The number is disturbingly high considering that proper diagnosis and screening can prevent some serious complications.
Bossier City residents Annah, Kara and Haley all live with Hereditary Hemorrhagic Telangiectasia.
Symptoms can become much more severe than nosebleeds and include gastrointestinal bleeding, lung and brain hemorrhages, and strokes among others. Because of this, many HHT patients need regular blood transfusions. In June, HHT Awareness month, LifeShare Blood Centers is holding several blood drives along with the HHT Foundation and HHT patients in other Louisiana communities, which LifeShare serves, to increase awareness of this disease.
Bossier City resident A’Lisa Hamilton and her three daughters all carry this disorder. Having only recently been diagnosed, A’Lisa and her family now actively promote awareness. “I will never forget that feeling of shock and panic after hearing that all three of my daughters tested positive for HHT. I’d thought Annah probably had it because of her weekly nightly nosebleeds; and Haley, who is currently nosebleed-free, but has six telltale broken telangiectasias (small blood vessels) on her hand. Though Kara had only had a few nosebleeds, I held out hope that at least one of my children had escaped this heartbreaking diagnosis,” says A’Lisa Hamilton.
Hamilton and her husband Eric have helped to organize an HHT Awareness Blood Drive on June 23, HHT Global Awareness Day, at LifeShare Blood Centers in Shreveport and Bossier City from 8a.m. – 3p.m. and a drive on June 24 at The Simple Church from 8a.m. – 1p.m. at the Shreveport Convention Center and at the Boardwalk. For additional blood drive information call LifeShare Blood Centers in Shreveport at 318.673.1471.
In the Lake Charles area, Leonard “Doc” Hanks has needed regular blood transfusions because of HHT, to which he lost a cousin. “It knows no race or ethnic barriers, and it is found worldwide. HHT has killed my grandmother, mother, several aunts, and several cousins. My grandmother had 10 daughters and one son. I have a big family, and statistically, over half of my family has HHT. The worst known case of HHT in the world was my first cousin, Raymond LeBlanc, from Ragley, Louisiana. Raymond passed away on Oct. 4, 2010, at the age of 64. Raymond started receiving blood 10 years ago. In 2010, he was getting 3 transfusions a week,” says Doc Hanks. Hanks has also worked with LifeShare to organize a number of HHT Blood Drives in the Lake Charles area.
For more information about HHT visit www.hht.org.