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Help us raise awareness for pediatric rheumatic diseases
This September is the inaugural Rheumatic Disease Awareness Month! We’re excited to celebrate this important awareness month with the American College of Rheumatology and its national public awareness campaign, Simple Tasks. The theme for 2016 is “Hundreds of diseases, one voice.”
What are pediatric rheumatic diseases? There are more than 30 inflammatory rheumatic diseases, such as juvenile arthritis, systemic lupus, scleroderma, vasculitis, juvenile dermatomyositis, periodic fever syndromes, sarcoiosis, sjogren syndrome and other more rare diseases.
Rheumatic diseases are due to a malfunction of the body’s immune system which instead of fighting off things that make you sick, like viruses and bacteria, it attacks different parts of the body. The overactive immune system can attack anything and each patient is affected differently depending on what the immune system attacks.
Pediatric rheumatologists are the specialist who treat rheumatic or autoimmune diseases in children and adolescents.
Who gets pediatric rheumatic diseases? Nearly 300,000, or 1 in every 250 American children, suffer from rheumatic diseases, the most common of which is juvenile idiopathic arthritis (JIA). This causes the same types of pain, disability and co-existing diseases that adults with rheumatic diseases often experience.
What is Texas Children's Hospital doing to raise awareness? There are fewer than 350 doctors who care for children with rheumatic diseases in the U.S. Texas Children's provides access to care for children with rheumatic diseases by providing at least 5,000 office visits each year. We also train doctors who specialize in the care of these children.
Our doctors are making a difference! Below are a few stories from our patients:
A 19 year old with systemic scleroderma (age of diagnosis: 16 year old): For as long as I can remember, I was always a very active and athletic girl. Suddenly, things began to change. By the summer of my sophomore year of high school I began to notice my hands turn completely purple and blue in 100 degree heat. I visited a hand specialist who diagnosed me with Raynaud’s phenomenon, and advised I keep my hands warm. It did not matter how hard I tried to keep my hands warm, they continued to get purple and, at times, completely white and painful. About a month I began to notice constant aches and stiffness in my joints. At first, I was just stiff in the morning, but as time progressed so did my symptoms. I was in constant pain, I wasn’t able to play soccer as much as I wanted to – I went from a starting varsity soccer player to benchwarmer. I became very angst at the constant pains. After many X-rays and tests the doctor could not find any reason to determine why I was feeling these aches and pains. By this time, my hands looked like bear claws, the joints in my hands prohibited me to close them completely, I was always out of breath even without exercise, and my joints were extremely stiff. My pediatrician knew something was completely wrong, some type of auto immune disorder, so she referred me to Dr. De Guzman, a rheumatologist at Texas Children’s hospital. Anxiously, my family and I waited, hoping nothing would be wrong, but deep inside we knew something was wrong. In January 2013, I met Dr. De Guzman. Not five minutes into the appointment, she knew what I had. She told me I had systemic scleroderma, an autoimmune disorder that affects the skin and internal organs. Autoimmune disorders occur when the immune system malfunctions and attacks the body's own tissues and organs. She explained that my disease was very serious and life threatening if not treated quickly, and according to my symptoms, there was huge war going on inside me. The next day I was admitted to the hospital and began treatment. She ran tests to make sure my condition had not caused any damage to my major organs. Luckily, we caught my condition just in time; there was no extensive or life-threatening damage to any of my major organs. I continued treatment, and gradually I regained movement in my joints, my lung function improved and I felt better than ever. My visits to the doctor became less frequent, and as I continued to get better, I needed to take less medication. My road to recovery was very difficult, it had its ups and downs; it took a lot of my effort to be able to manage my health and my studies. I can now say I am the person I am today because of my diagnosis. I learned so much about myself and what is truly important in life. I am extremely grateful and blessed that I was under the care of Dr. De Guzman, Dr. Vece and all the staff at Texas Children’s who helped in some way or another to my recovery. I hope and dream that one day I will become as good of a doctor as these two extraordinary care givers.
A 17 year old with Lupus (age of diagnosis 12): I was diagnosed with lupus when I was 12 years old. Lupus is an autoimmune disease. It is a disease caused when the immune system attacks its own tissues. It affects my joints and muscles causing pain whenever I encounter a lupus flare. Normally lupus attacks an organ, and apparently in my case, it attacked my brain five years ago causing two strokes in my brain. It made me half blind for a time and I had to take blood thinners for two years. I am on steroids and other medicines to keep my lupus calm.
Mother of patient, 4-year-old with systemic JIA (illness started at 9 months of age): She was so severely ill and we had no idea of the journey that was just beginning… We didn't know if she would make it through the night. I am so teary-eyed, yet so very thankful and humbled. God has a super special plan for her life… Just a tad bit about our little miracle…she has systemic juvenile idiopathic arthritis (SJIA). Systemic means the entire body in this case. When she first became sick at 9 months old she obviously had this yet we did not know it at that time…When she became severely ill, she had hemophagocytic lymphohistiocytosis too which was a secondary illness to SJIA. Many children who have JIA without the "systemic" part of it usually live very normal lives on medicine; however, the systemic part of it makes it more complicated where they can become very sick with secondary illnesses that can be rapidly fatal. So when people hear "arthritis," it seems like swollen or achy joints, but it really almost has nothing to do with that. I mean, yes, she does have pain when she becomes ill, but it has more to do with her cells and her immune system responding properly.
In addition to raising awareness, we are raising funds to create patient programs, train new rheumatologists, advance our research and care for families touched by rheumatic diseases. If you are interested in making a gift to support the Rheumatology Service, please contact the Texas Children’s Hospital Office of Development at 832-824-6806. If you’re interested in learning more about Texas Children’s Rheumatology Services, please click here.
Thanks for helping us spread awareness during Rheumatic Disease Awareness Month!