by Vilissa K. Thompson, LMSW
May 6th is Wishbone Day, an international awareness day for Osteogenesis Imperfecta (OI), better known as “brittle bones.” The idea for Wishbone Day was birthed at the Australian OI Conference, held in 2008. There was a discussion about how to raise more awareness about OI, which is one of the lesser-known congenital disorders in America, and abroad. Those who attended the conference decided to declare May 6th as the date for an OI awareness day. On May 6th, 2010, the first Wishbone Day was celebrated, and the growth of this special day has grown exponentially, reaching North America, and parts of South America, Europe, and Asia.
This awareness day is very dear to me because I am a person living with Osteogenesis Imperfecta. There is an estimated 25,000 – 50,000 people thought to be affected with OI in the United States.
Osteogenesis Imperfecta (OI) is a genetic disorder characterized by fragile bones that can easily break. This is a congenital disorder, meaning that OI is present at birth, and the individual will be affected by OI throughout their entire lifespan. OI is the result of a mutation error on a gene that is responsible for the body’s production of collagen, a fibrous protein, found in bones and other tissues. OI is not the result of poor calcium intake or poor nutrition.
Those with OI are not only afflicted with multiple bone fractures, but can also have other medical issues, including muscle weakness; hearing loss; fatigue; joint laxity; curved bones; scoliosis (curvature of the spine); blue sclerae (blue-gray tint to the “whites” of the eyes); dentinogenesis imperfecta (brittle teeth); and short stature. There are 8 different types of OI. These types range in severity of symptoms and the specific medical problems someone with OI may face.
Personally, I have had less than 10 bone fractures in my lifetime, along with mild hearing loss, and have endured numerous rodding surgeries that made it possible for me to walk (with leg braces and a walker). The rodding surgeries allowed me to develop my independence, which is a natural characteristic of mine. (I remember reading reports describing me as being a very independent child at five years old. I have always enjoyed doing things for myself, and if I need assistance, I have no qualms about asking for it; just give me the chance to try it on my own first.)
OI is one of the few disorders that have characteristics of average to above average intelligence, as well as having a natural euphoria for life. (One such person that comes to mind when I think about someone with an infectious optimistic spirit: the self-proclaimed Kid President, who has OI.) Those of whom I have met with OI are very intelligent, successful in their respective professional fields, bursting with positive attitudes and inviting personas, seem so enthusiastic about life, and meeting other people with OI.
Though it may seem strange, I am very appreciative to be living with OI. “Appreciative” may not be a word usually associated with having a disorder, but it fits how I view my disability. Though I may have to use a manual wheelchair to travel, having OI does not prevent me from achieving my goals and fulfilling my purpose.
Despite the “challenges,” I view my life as very humbling. I know how fortunate it is to be as mobile as I am (even on wheels or using a walker), and I recognize that I was given this life for a reason. As I like to say, I have made “sweet lemonade” with the lemons (“lemons” in this context, meaning OI) life has given me. I do not view my disability as a disadvantage; it has allowed me to connect with people in ways that I do not believe would have taken place if I was able-bodied. With each experience and interaction, I grow as a person and my outlook is forever changed, and I believe that the people I encounter are positively influenced by my steadfast, determined demeanor as well. I know that some people with disabilities shy away from the “inspirational” label, but I do not. If someone meets me and my life story causes them to no longer permit obstacles or negative circumstances to rob them of reaching greater heights in their own lives, those kind of revelations drive me to work harder in urging others to achieve their unique life missions.
When I saw the various newsletters about Wishbone Day, I knew that it was my duty to use my platform on SWH to bring forth awareness about this lesser-known disorder. Though those with OI may be fewer in numbers compared to those with other disorders, we still need to do our part to ensure that OI is on the radar of disability advocates, organizations that support people with disabilities, and our local, state, and federal politicians who implement policies and support medical research funding for various congenital disorders. If we do not make our voices heard by telling our stories, then who will pay attention? Who will stand firm in demanding that scientific research focus on developing more ground-breaking treatment options for those with OI? If we want progress to come, we have to be a unified front in requesting such actions take place.
I hope that you will support Wishbone Day by wearing yellow (the official color of Wishbone Day), and learning more about OI. One great source that has almost everything there is to know about OI, medical treatment, current research studies, and testimonies of those living with OI is the Osteogenesis Imperfecta Foundation.
As I like to say, my bones may be fragile, but that is the only “weakness” I have. As long as I am alive, I will continue to shatter stereotypes and glass ceilings – my spirit is unbreakable and my future shines brighter than the sun.
Being born with a disability, can sometimes be a struggle, but it is the ability to overcome such a challenge, that makes it so worth the fight. NEVER GIVE UP!!!
– Robert M. Hensel