By: Lorrie Ward | Category: In Our Communities | Issue: May 2014
Mira Wilson was diagnosed with OI, also known as Brittle Bone Syndrome, at three weeks old.
If you are at Claremore Lake the afternoon of the first Sunday in May and you see a group of people wearing yellow as they walk and run around the lake, you may be tempted to ask: “Why are all these people here? And why are they wearing yellow?”
Lindsay Wilson hopes that if people have these questions, they will ask someone. This is just what she had in mind when she started a local effort to be a part of Wishbone Day at Claremore Lake on Sunday, May 4 at 4 p.m. Wishbone Day is an international community awareness effort to raise positive awareness of Osteogenesis Imperfecta (OI), a disease Lindsay’s 20-month old daughter Mira was born with and will have for the rest of her life.
In fact, every person who suffers from OI is born with it and will suffer with it throughout life, even though it may be later in life when they are diagnosed. While the number of people affected by OI in the United States is unknown, the best estimate suggests that the number is a minimum of 20,000 and possibly as many as 50,000. The disease, commonly known as Brittle Bone Syndrome, is caused by a mutated gene that causes the body to produce defective collagen. Other symptoms can include muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, brittle teeth, and short stature. There are eight different types of the disease, which range in severity from lethal to a mild form with few visible symptoms. A mild case of OI may produce a few fractures while a more severe type might cause hundreds of breaks and fractures over a lifetime.
Because there is so little awareness of this disease, it is often not diagnosed until the patient has broken or fractured bones several times. In Mira’s case, the diagnosis came early when the doctor broke her femur during a routine newborn check at three weeks. As a loving mother, Lindsay set immediately to learning all she could about the disease and was disappointed to find that dietary supplements, like calcium, would not help. Even more disappointing was the fact that there are only a few treatment options available and these produce far less positive effect than needed for OI sufferers to lead a normal life. Lindsay hopes that events like Wishbone Day will raise awareness, which in turn will help raise funds for research.
“OI is currently one of the lesser known conditions, and we want to bring as much awareness as possible in hopes that the funding will grow for research, which will bring more treatment options for the future,” says Lindsay.
To help Mira and others like her, first learn more about OI or Brittle Bone Syndrome by visiting
www.oif.org and www.wishboneday.com. Then mark your calendar for Sunday, May 4 at 4 p.m. at Claremore Lake, put on your walking shoes, wear something yellow, and be ready to answer questions – because that’s what Wishbone Day is all about!
For more information, contact