The story of Brenda
My name is Brenda Biggar and a person that is affected by Hereditary Hemorrhagic Telangiectasia (HHT).
HHT is a genetic disorder of the blood vessels that affects one in 5,000 Americans. If not diagnosed and treated in a timely manner, HHT can result in stroke, death and disability from Arteriovenous malformations (AVMs) in the brain, lungs, liver, spine as well as bleeding in the nose and gastrointestinal tract which range from mild to transfusion dependence. . Fortunately, early detection, screening and treatment can prevent premature deaths, disability, and long-term health complications, as well as costly consequences resulting from lack of diagnosis. Approximately 9 out of 10 people are not yet diagnosed due to lack of awareness in the medical community and public. According to a study by Yale University, the national health care costs can be reduced by $6.6 billion through timely identification and management of HHT manifestations.
My husband was diagnosis with HHT after ten years of nosebleeds. He has the telangiectasia all over his body and in his mouth which can bleed. This is hereditary. My daughter was just tested and she has it. Now we are waiting on the test results for my two granddaughters. As a wife and mother we desperately need awareness, treatments and hopefully a cure one day. You end up having to live like a hermit because of the nosebleeds. Then you face all the problems that come with it, like anemic which then causes other problems including death. Let’s not let this happen to our children. We can save lives through awareness. We can save a babies life.
I believe there are some cases that have not even been diagnosed due to the lack of research and lack of education to doctors and the public. Please note that even in Charlotte you can not find a doctor that knows how to treat HHT or even knows about it. I STRONGLY believe that nose bleeds and bleed outs are being mis-diagnosed.
Points
• Bleeding from nose, eyes, face, lungs, brain, etc. uncontrollably and the liver which is fatal
• Current medicines have horrible side effects
• Treatment is expensive
• Young children are dying early from lack of treatment options
• Parents have no support caring for bleeding family members
• Can not go out in public due to bleeding
• Effects the whole family not just one member because a family night out for dinner may turn into a 3 to 4 hour bleed at home.
• Low iron, living on transfusion, iron pills, and stool softeners
• Long drives to doctors and hotel bills
• Etc….