National Osteogenesis Imperfecta Awareness Week
CENTREVILLE – At their May 9, meeting, the Queen Anne’s County Commissioners proclaimed May 5-12, 2018 as National Osteogenesis Imperfecta Awareness Week in Queen Anne’s County in support of the Osteogenesis Imperfecta Foundation’s efforts to raise awareness of this rare disorder. Governor Larry Hogan made a similar proclamation for the entire month.
Osteogenesis Imperfecta, also known as brittle bone disease, is a genetic disorder characterized by fragile bones that break easily. A person born with Osteogenesis Imperfecta is affected throughout his or her lifetime. Because there is no cure for Osteogenesis Imperfecta, treatment focuses on minimizing fractures, the surgical correction of deformity, reducing bone fragility, maximizing mobility and independent function. Not only does it affect your bones it can affect your heart, lungs, muscles, tendons, hearing and teeth.
Osteogenesis Imperfecta can be mild, with only a few fractures during a person’s lifetime and in more severe cases, it can involve hundreds of fractures that occur without any apparent cause. Increased funding for education and research for Osteogenesis Imperfecta is greatly needed to help find more effective treatments.
County Commissioner Robert Buckey’s 9-year-old granddaughter accepted the commissioner’s proclamation and read a short letter she had written herself. As part of the letter she wrote, “My mommy and I were born with and have Osteogenesis Imperfecta. We have both had more cast than our ages and we both have had surgeries due to injuries from Osteogenesis lmperfecta and are facing more in the future. My mommy and I face Bullying and discrimination every day. Therefore, it is so important to make awareness about Osteogenesis lmperfecta.”
“So, in closing I am presenting you each with a wristband that says Unbreakable Spirit. This is the Osteogenesis Imperfecta motto. We might have lots of injuries and breaks, but it will never break our spirit. So, when you look at this wristband with the words “Unbreakable Spirit.” Yes it represents the Osteogenesis Imperfecta motto, but it is true in everyday life and for everybody. NEVER LET ANYONE OR ANYTHING BREAK YOUR SPIRIT. Thank you, Claire Andrzejewski”