Osteogenesis Imperfecta

Osteogenesis Imperfecta (OI) is known as brittle bone disease, and is a genetic disorder in which an individual has weakened bones that may fracture in situations of minor to inexplicable trauma. OI spans from a slight degree to the more critical cases which may lead to death moments after their delivery or prior to their existence (“Learning About Osteogenesis Imperfecta,” 2012). No two people suffering from this condition share the same measure of difficulty. In fact, though there are various forms of OI (I, II, III, and IV), those who fall in the same category of OI do not always manage their disorder the same way which can either prolong or exacerbate the problem. According to the National Organization for Rare Disorders (2016), Osteogenesis
Sadly, there are cases of child abuse that occur with OI children. For example, an OI child left on the edge of the bed is more prone to injury, in which case a parent would be held negligible. Question: What were some obstacles you had to face as an adult with OI? Answer: Employment, education, transportation, finding clothes that fit, stereotypes, and prejudices. To start, employment can be an obstacle in regards to phones, and fax machines being out of reach. Meanwhile, education has been a constant battle with regards to placement, and to getting the ball rolling for OI students’ future success. Then, there is transportation, and it can be a nightmare when it is not readily available to you. For instance, if you do not have adaptive vehicles, and you have to rely on public transportation which may be a problem if your community does not offer public transportation; then, you are up a creek with no paddle. Next, when it comes to clothing, nothing ever fits right, thankfully, my best friend Jaqueline customizes my clothes for
stars, guest speakers, and OI Foundation), why is it important for those looking to get into the medical profession to learn about OI? In addition, why is it important for the public to learn about OI? Answer: I believe it is prudent to become acquainted with a diverse range of medical conditions because OI has been around for thousands of years, and until a cure is found there is a good possibility either I or others like me will cross your path. With respect to non-medical people or the general public, on us is on us meaning the responsibility is on us. Therefore, it is up to the OI community to be self-educating about this condition in order to teach others as we cannot go through our world feeling offended because people do not understand us if we cannot understand ourselves. Furthermore, the more we know the more we are obligated to share, and it will be through sharing our knowledge that solutions will come. Question: What would you like for the public to understand about OI? Answer: I’m not sure that it is more important than any other “special need”, but it is important to see we all have hopes, and dreams, and