Lupus is a chronic inflammatory disease that attacks the body's tissues and organs. Lupus can be a debilitating disease. My sister-in-law was diagnosed at the tender age of seven and she lived her entire life in mild to severe pain. The dresser in her bedroom resembled a small pharmacy. She was on an aggressive high-dose steroid regiment, which was intended to relieve the pain and allow her to function normally. She was obese, had little physical activity, and suffered from skin rashes in addition to the severe joint pain that plagued her for days at a time. She passed away at the age of twenty-five, with her older sister holding one hand, me holding her other hand, and her big brother (my husband) massaging her legs.
My sister-in-law benefited from drug therapy research. At the time, her doctors were using many new and innovative drugs to treat her symptoms. She was able to go to school and enjoy childhood in spite of the pain she was in some days.
I became interested in pediatric lupus because I wanted to learn about the disease that caused my sister-in-law so much pain. The only time she didn't smile was when she was in pain. However, you could count on her face shining brightly and flashing a smile everyday!
I tend to read as much research as I can about Lupus and HIV. After losing two important people to such horrible diseases, I have found working as a volunteer and giving as much of my time as possible, particularly fulfilling and meaningful.
One interesting study that I would like to share is about researchers learning about Reduced Bone Density in Newly Diagnosed Children with Lupus.
Because of the amounts of high-dose steroid treatments, lack of vitamin D, skin rashes, lack of physical activity, and obesity in children with lupus there is an increased risk for osteoporosis.
"The researchers hoped to learn about the prevalence of low bone mineral density, as well as to identify risk factors for its development in a large cohort of newly diagnosed children and adolescents with lupus" (Lupus Foundation, 2013).
The study took place at SickKids Lupus Clinic in Toronto, Canada. 80 children 5 years of age to 18 years old who were newly diagnosed with lupus were studied between December 2001 and 2007.The children underwent bone scans within three months of being diagnosed. They received 80 units a day of vitamin D and 1,000 mg/day of calcium supplementation. Advanced statistics were used to determine a relationship between bone scan measurements and clinical and laboratory measurements (height, weight, blood levels of calcium and biological vitamin D).
Reduced bone density was not impacted by lupus activity or treatment. Reduced bone density measurements were associated with lower body mass index and reduced calcium levels. Reduced hip bone density measurements were associated with lower body mass index.
What was important about this study was that newly diagnosed children were studied to predict long-term osteoporosis. It is largely unknown whether children with lupus grow to reach their genetic degree of bone growth. Due to the results, vitamin D and calcium intake is encouraged in children with lupus and bone mass density is monitored long-term.
There is no cure for lupus and it remains a "mysterious disease". Lupus is a lifelong disease. With research and clinical studies, managing lupus and understanding the effects of medications on symptoms have improved significantly. Children with lupus are living for longer periods of time than any other time in history.
Reference
Lupus foundation. (2013). Reduced bone density in newly diagnosed children with lupus. Retrieved March 23, 2013 from
http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=4344&zoneid=76
