State Representative Jennifer Callahan, D-Sutton, presented a Resolution from the Massachusetts House of Representatives recognizing the awareness month to Dr. Foster and OIUF board members at a small ceremony at the State House on September 24th. Ashley Floreen, a former colleague of Representative Callahan and a patient at MERSI, played a special role in orchestrating the event. Ashley, who has suffered from scleritis for over six years, says she hopes this recognition will bring much needed attention to ocular inflammatory diseases and the Ocular Immunology and Uveitis Foundation. “My scleritis went undiagnosed for five years. Although I grew up less than 30 miles from Boston and attended college in Massachusetts, none of the physicians I saw suggested I see a specialist and treated my flares only with steroid drops. As a result, I spent many nights studying for exams and writing my senior thesis with my hand over my eye, hoping the pain and redness would subside. When I graduated college in May 2007, I returned home and saw a fifth ophthalmologist, who recognized the severity of my condition and referred me to Dr. Foster. After years of wondering what was wrong, I could finally put a name to my disease.
Like many patients, my OID has been stubborn to control. I have had to climb high on the stepladder, trying numerous NSAIDS, immunosuppressive chemotherapy treatments, surgery, and of course the infamous steroid drops, in hopes of finding a recipe which will put me in remission. As my mother and I looked around MERSI at my first appointment and saw patients receiving intravenous infusions, we thought maybe my condition was too mild for this type of facility. Unbeknownst to us, my scleritis was stubborn enough that fifteen months after my initial appointment with Dr. Foster, I recently sat down to my first IV infusion, hoping this medication will be the one that leads me to remission.
I never imagined the road to recovery would be this long and complicated, nor did I truly understand the consequences of under-treating ocular inflammatory diseases until I became a patient at MERSI. As a result, I wanted to take an active role in advocating for patients whose vision has been affected by these orphan diseases. Because they are so rare, the public, as well as many physicians, do not understand the importance of referring patients early to preserve vision. I am extremely fortunate that I have not suffered from the effects of chronic steroid use and inflammation and my vision remains 20/20 today, thanks to an aggressive medical team at MERSI and the important research conducted through OIUF. However, many patients are not as lucky. They were not diagnosed in time to receive steroid sparing treatment and consequently have lost all or part of their vision. I hope by declaring September 2008 as Ocular Inflammatory Disease Awareness Month in Massachusetts, more attention will be paid to illnesses such as uveitis and scleritis and more states will follow suit so we can create national awareness of a disease that affects many individuals and causes far too many people to unnecessarily lose their sight.”
