Very few people know this about me, but this December, it will be 10 years since I was diagnosed with lupus. To recognize this milestone, I am raising money for this year's Lupus Walk to be held on Saturday, Sept. 22 at Cazenovia Park & Casino. I don't know why I haven't talked openly about this much in the past, but I hope to start doing it more because bringing it to the forefront is the only way to raise awareness and funds for research. Systemic lupus erythematosus (SLE or lupus for short) is a chronic autoimmune disorder. This means that the body attacks itself when there is no issue. The average diagnosis takes SIX years! This is due to the fact that periods of disease activity can come and go and the presenting symptoms are similar to other diseases. There is a list of 11 criteria for establishing a lupus diagnosis - you must meet a minimum of four. Because of the wide range of symptoms, no two lupus cases are the same. My diagnosis took about six weeks, but I had severe symptoms including chest pain and trouble breathing that seemed like pneumonia but no antibiotic would touch. I was admitted to the hospital the day after Christmas and on Sunday (my 17th birthday!) we finally had an answer. I had seven of the 11 criteria, including fluid in the linings of my heart and lungs, swelling that moved between joints with no pattern, and low blood cell counts. I owe it to my Mom, who would not take "no" for an answer and kept pushing for more appointments and more tests until someone figured it out. Active periods are known as "flares," and that was the worst I've ever had. I had a medium flare when I started college, which actually pushed me to see a rheumatologist in Rochester (whom I still see and love dearly). I had another in 2015 after I moved home after graduation. I regularly see a rheumatologist, a nephrologist, an eye doctor (as a preventive measure against a rare side effect in one of my meds) and I recently started with a dermatologist to keep an eye on my malar rash. I can monitor myself by taking note of my symptoms and having blood work drawn frequently. There are certain tests and indicators that can predict a flare. I am lucky to not have the daily joint pain and debilitating fatigue that is commonly reported in people with lupus. Something I have struggled with is my medication. I am back on medication after my 2015 flare, which at this point is five daily prescriptions. These slowly helped my symptoms, but the blood work still looked bad. I started receiving a Benlysta infusion once a month in spring 2016 as the flare from the previous fall wouldn't budge. These infusion appointments have been an issue with some of my past jobs, juggling appointments during the work day or getting comments about taking time off on what is going to be a busy day. I learned in the future I need to step up and say, "I need this to be healthy. When I'm healthy, I can come in every day and be productive." People often don't understand unless they have been through it themselves. There are some other aspects of my life that are impacted by lupus. For example, I can't be in the sun. Sunlight is a known trigger for flares. The easiest way to avoid it is to stay inside, but then I miss summer activities. Heavy doses of prednisone caused death of bone tissue due to lack of blood supply, known as avascular necrosis. I had both of my hips replaced before I was 22 due to AVN and I will most likely need more surgeries in the future to correct other joint issues. (Former NHL goalie Ray Emery also had surgery to correct AVN in mid 2010!!) I hope by opening up about my diagnosis this will raise awareness for lupus. Please consider donating so we can learn more about it and find new treatment options going forward.