This is my story: 

It was the summer of 2000, my senior year at Stephen F. Austin State University, when my friends and I spent as much time at the pool as we did in class or at the library. My maternal grandmother had a stroke in mid-March; therefore, I was going back and forth to Troup where she lived and saw my parents more than usual. Our family had a very rough summer that year. At my grandmother’s funeral my mom noticed I had a rash on my cheeks but we both thought it was because I had been in the sun so much. Granted at this point in my life I thought hanging out at the pool was the most important part of college. When I saw my mom two weeks later at my great aunt’s funeral, it had gotten noticeably worse so when I got back to Nacogdoches, I saw a dermatologist. I will always remember that day and that doctor’s visit when I learned the sad news. The doctor did a skin graph on my chest; three days later he told me that he thought that I had Lupus. I knew about Lupus and what that could mean for me because my father’s niece, my cousin Misty, had battled Lupus her entire twenty plus years of her life. I had witnessed her having a kidney transplant and both legs amputated. She died in January 2006. So you see I knew exactly what the dermatologist was saying when he spoke my diagnosis. 

I finished my final semester of summer school and graduated with a degree in business and moved home to live with my parents until I could find a job and start “the real world.” Now to most people leaving the freedom of college, starting a new job, and trying to make it in the real world is a lot of stress, but I added in my second dermatologist visit in Plano where my whole world crumbled. She confirmed that it was Lupus. She prescribed medicine with instructions to get another appointment in a few weeks to see if there was improvement in my condition. This went on for quite some time and finally started to get better until I thought I was in “remission”. 

A few months later things got worse. I began having problems with my joints and kidneys. At this point I was 24 years old spending more time with rheumatologists and kidney doctors than with family and friends. Unfortunately, with Lupus you never know what is going to happen next. I began getting weaker and weaker and losing weight. I was so tired that it took all I had to wake up in the morning and go to work. I would literally come home from work and fall asleep in the chair while watching TV and sleep until it was time to get ready for bed. I was taking painkillers for my joints and the pains in my hands and toes. I felt like an 80 year old with the life literally being sucked out of my body. Finally, after a lot of tests, I was told that I was suffering from Vasculitis which is basically tiny blood clots in your fingers and toes. So now I was on coumadin, a blood thinner, at 25 years old. Of course, now thinking nothing else could possibly go wrong but knowing that I was still very sick, I found myself one day forcing myself out of bed while throwing up and calling my dad crying. I went to the doctor for my weekly blood check. I was admitted to St. Paul with a pulmonary embolism in my heart. I found myself on a 10 day “vacation” at their lovely ICU unit at St. Paul Hospital. After a lot of waiting and praying, my entire body was scanned, poked, and tested before I was allowed to go home. 

Over the last 23 years things have continued to get better! I am completely off of steroids and have been off of kidney medicine now for thirteen years, and my kidneys are doing well! The antibodies that show up in my blood test are showing up now as negative most of the time! I feel a hundred times better than I have in a long time. I know what I have been through during these past years but have hopes that I will continue this uphill battle and continue to win. I know with the help of research someday other people will not have to go through what I have had to endure. 

As of May 2023 we reached a goal of $181,000 fundraising for the Lupus Research Alliance. In 2015 we celebrated our 10th walk with the LRA and I got the opportunity to go to Washington DC and advocate for Lupus Research. Huge strides have happened with the government for funding for Lupus. The money we are raising has helped bring new drugs to the market specifically for Lupus that we have not had in the past. The Lupus Research Alliance merged with the Lupus Institute combining a huge force in to move forward with research. I am excited to see what has happened so far and the changes that are being made as we move forward!! Together we are fighting back and I do believe that together we CAN find a CURE for Lupus!