This will be in our HHT news letter this summer, figured I'd let you look at it first!
Mary Geake has no prior experience with legislative advocacy, just a passion to help the HHT Foundation. Mary’s long history with HHT began at the age of nine with frequent nosebleeds. She remembers her father and two brothers visiting an ENT who told them their bloody noses were due to Osler-Weber-Rendu Syndrome. In 1983, Mary had her first operation to stop her nose bleeds – a skin graft from her arm was put up her nose. This helped stop the bleeding for almost 8 years. Then in 1991, at the age of 36, she suffered a massive stroke when the CAVM in her brain burst. “They thought I was dying and gave me last rites,” said Mary. Determined to be around to raise her three boys, she learned to walk and do everything without the use of her right side.
In 2000, Mary started having problems breathing. She ended up in a hospital where after a lot of testing doctors told her she had Osler-Weber-Rendu again or HHT. “What did my bloody nose have to do with my lungs?” questioned Mary. Determined to get answers, she reached out to the HHT Foundation for help. She soon found out everything she needed to know about this rare disorder. Since that time, Mary has had three embolisms on her lungs. She continues to have bloody noses, and has spinal pain so bad that she has been on a morphine pump since 2005. “I have a lot wrong with my body,” says Mary.
In a quest to meet others with HHT, she attended her first Regional Network Alliance meeting in January 2009 and was stunned to read in our literature that the HHT Foundation does not receive any federal funding. “Once I realized this I knew I had to do something. My husband and I traveled to Washington, DC last June to attend the HHT Foundation’s “Capitol Hill Day.” Armed with knowledge, we secured an appointment with Rep. Jim Himes from Connecticut’s 4th congressional district and shared our story of how HHT has affected our family. He listened and signed the authorization bill declaring June 2009 as the first National HHT Awareness Month, a first step in the plans obtain federal funding for HHT.
Since then Mary has continued her pursuit of federal funding for HHT. She has contacted the office of Rep. Rosa L. DeLauro from Connecticut’s 3rd congressional district who serves on the Labor-Health and Human Service-Education Subcommittee of the Appropriations Committee. DeLauro lives in New Haven, Connecticut just miles from Yale University where one of the best HHT doctors in the world, Dr. Robert I. White, is located. “My goal is to get her into the Yale HHT Center to see the facility and see the good work that is being done there.” When asked what others can do to get involved, Mary believes we need to pull together to create awareness for this disease that affects so many family members. She wants people to know the warning signs and get tested. Mary struggles with her own family members refusing to be tested. “These tests are expensive,” says Mary. “We need national attention for people to realize their importance.” “Television shows such as ‘Dr. Oz’ and ‘The Doctors’ could be powerful vehicles to create awareness for HHT. “If 150 people send an e-mail to the producers requesting an episode about HHT, we might be heard.” In Mary’s words, “If we come together, we can do so much.” Mary Geake and her husband, Michael, live in Norwalk, Connecticut.
Ok, so now you know all about me, if you wanted to know that is!