Welcome to Brett and Sue's story
Brett's Story
My name is Brett, and I was diagnosed with Lupus in 2010. I was always a very active kid, I was on the drumline during the Fall, I swam during the Winter/Summer, and I played baseball during the Spring/Summer. When I was 17 little did I know my life would change forever. Lupus, it is not something a lot of people know about, in fact I’ve had people ask if I was turning into a wolf, and the people who do know about it don’t really know everything that is entailed with it unless they have had a loved one who has dealt with it. I was only diagnosed as early as I was because of having a thing called Raynaud’s, which I started experiencing when I was 14. Reynaud’s is a disease in which cold temperatures cause the blood to rush from your extremities to your heart. I remember shaking my hands incessantly to get my fingers to go un-numb and it wasn’t until a swim meet in 95-degree weather that my mom noticed my fingers after I got out of the pool go from pale white to a deep red to a purplish hue. She immediately took pictures to show my doctor. After a couple of weeks, and a referral to a rheumatologist, I got my answer, I have Lupus, which didn’t really mean anything to me at the time, to me I was just wondering what I do to fix my fingers from going numb. Fast forward 13 years and Reynaud’s was the least of my problems. Since my diagnosis, I can’t tell you how many blood tests, biopsies, MRIs, EKGs, and hospital visits I’ve had. During my freshman year of college, I lost part of my hair and had a butterfly rash across my face that swelled and made it look like I just got out of a boxing match. I’ve had inflammation in the lining of my heart and lungs for 5 years straight, which didn’t allow me to lie flat on my back, walk up a flight of stairs or move faster than a slow walk without clutching onto my chest in pain and gasping for air. Along with the inflammation the best solution I was offered was to take prednisone for those 5 years, which ended up thinning my skin and giving me multiple stretch marks across my body. I’ve had a couple instances of getting cellulitis in both my right leg and my elbow. However, all of that was insignificant compared to the news I got in 2018, when my nephrologist called and told me that I was going through stage 2 of kidney failure, and I had to go on chemo. Nothing made my heart sink lower to the ground than hearing those words and being told that I could potentially go infertile and lose any chance of having a child in the future. While everything I went through might sound dark and gloomy, I’ve always taken everything in stride and have always made it my purpose in life to not let my disease dictate my life. I am proud to say that I’ve managed to get through the chemo, which not only saved my kidneys but put my Lupus in remission, I had a beautiful little girl with the help of IVF and aside from still getting the occasional butterfly rash, dealing with arthritis in my joints, feeling tired all of the time and constantly having instances of brain fog, I’ve still maintained my positive outlook on life and will continue to keep fighting this battle that I’ll be fighting for the rest of my life.
Sue’s Story
My name is Sue. In 2006, When I was 35 years old, a very active mom to 2 teenagers, I started having an extreme unexplained amount of pain. After several doctor appointments, with numerous doctors, several hospital visits, Emergency visits, rashes on my face, arms and legs, severe body aches, joint pain, muscle spasms, unexplained chest pains, exhaustion, mouth sores, headaches, muscle pains, and extreme depression, I had 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 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 etc. My Dr recommended me to a Rheumatologist to get all of the questions I had answered. A few days later, I saw my new lifeline to fighting this disease, my Rheumatologist, where she diagnosed me with Degenerative Autoimmune Disease. Still lost in 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, as this diagnosis would change my life with my health insurance, life insurance etc. After numerous tests and several months of getting no true answers, way too many drug trials, I had more questions than answers. I was getting sicker, and nothing was working. Finally, after 3 years from the first onset of my symptoms, I was officially diagnosed with Lupus, and I was prescribed Lupus medication. Devastated, I had no idea what this meant for me, but relieved that I had a diagnosis, and I was also hopeful this medication would “cure” me. I found out quickly that there was no cure. I was diagnosed with 4 more autoimmune diseases, as well as complications from all the medications, and more illnesses that are associated with having Lupus. 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, I felt very depressed and didn’t know what was next. Over the next few years, many drug trials, blood work, altering dosages and a lot of adjustments, I was starting to get some relief, my levels were stable, and I started to have hope. The next 18 years have been a constant roller coaster of ups and downs, changes in medications, dosages, and seeing numerous specialists. Who knew one person could see 11 specialists that all end in letters “IST”. Although I may never be “cured”, I have learned to live with the daily pain and live my life to the fullest. Lupus flares occur more often than I like, but by staying active, and doing my best to lead a healthy lifestyle, I am 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. Most important lesson I have learned is to stay positive! Having a positive attitude and believing I can, being happy, enjoying those I love and truly appreciate the life I have, is how I go on every day, and continue to do my part to help raise funds for research and eventually one day to find a cure! #Noonefightsalone
Imagine a day when doctors can say, "There is a cure for lupus". Until that day though, there is work to be done. That's why we are taking action in the fight against lupus. Join us as we participate in the Lupus Foundation of America's Walk to End Lupus Now® to raise critical funds for the estimated 1.5 million people living with lupus in the United States.
Will you join our team and help us reach our fundraising goal? You’ll be supporting the Foundation's efforts to improve the quality of life for all people affected by lupus. You can also support by making a secure contribution on our walk page. Every single dollar counts!
Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
Together, we can solve the cruel mystery of lupus. Join our team today and support our efforts!