Discover Sue's journey with lupus and multiple autoimmune diseases since 2006. Follow her story of resilience, hope, and advocacy for research towards finding a cure. Join her in spreading awareness and support for those affected. 

My name is Sue. In 2006, at the young age of 35, I was a very active mom to two teenagers when I started experiencing extreme, unexplained pain in my hips, hands, and legs. After several doctor appointments, blood work, x-rays, scans, and multiple hospital visits, along with rashes on my face, arms, and legs, severe body aches, joint and muscle pain, spasms, unexplained chest pains, overwhelming exhaustion, mouth sores, headaches, and extreme depression, I visited my ENT for the new extreme ear pain I was experiencing. 

My ENT requested blood work to check my ANA. He had me come back into the office and explained that my ANA was positive, and I needed to see a Rheumatologist because he believed I had lupus. 

Confused, because I never heard of Lupus, I asked a lot of questions - - what is this? What can I expect? How did I get this? Is it contagious? 

My doctor referred me to a Rheumatologist for answers. A few days later, I began my journey in fighting this disease. When I visited the Rheumatologist, she diagnosed me with Degenerative Autoimmune Disease. Still lost about what this meant for me and what I could do to feel better, she told me that she truly believed I had lupus but didn’t want to prematurely diagnose me. After numerous tests and several months of unsuccessful treatments, including multiple drug trials and steroids, I had more questions than answers.

 I was getting sicker, and nothing was working. 

Finally, three years after the first onset of my symptoms, I was officially diagnosed with Lupus, and I was prescribed lupus medication.

I was devastated and had no idea what this meant for me, but also relieved that I had a diagnosis. I hoped this medication would “cure” me.  I found out quickly that there was no cure. Over time, I was diagnosed with four more autoimmune diseases and other illnesses associated with lupus, which required more medications. 

My life was severely altered, the young vibrant mom of teenagers, always on the go, was no longer. It’s as if I had to learn how to function all over again. I was more exhausted doing the things I loved to do before I got sick, and I felt very depressed and didn’t know what was next.

Over the next few years, through many drug trials, adjustments in dosages, and blood work, I was starting to get some relief. My levels were stable, and I started to have hope. The next 18 years became a constant roller coaster of ups and downs with changes in medications, dosages, and seeing numerous specialists. 

Who knew one person could see 11 specialists that all end in the letters “IST”?

Although I may never be “cured”, I've learned to live with the daily pain and live my life to the fullest. Lupus flares occur more often than I like, but staying active and doing my best to lead a healthy lifestyle have put me in a much better place mentally than I was when I was diagnosed at 35.

This disease has taken a lot away from me but has also taught me so many life lessons. The most important lesson I've learned is to stay positive! Maintaining a positive attitude, believing in myself, finding happiness, cherishing my loved ones, and truly appreciating the life I have is what gets me through each day. 

I will continue to do my part to help raise funds for research and eventually, one day to find a cure!