One in 400,000
For years, Randa Lee has battled a rare autoimmune disorder. After countless tests and bills, she was diagnosed with myositis.
Friday is the observance of Rare Disease Day. On this day, Lee said she hopes community members will take time to learn more about diseases that are discussed as rarely as they are diagnosed.
Lee moved to Webster City in June 2013. A Kentucky native, she moved to Iowa from Texas. When she underwent a couple surgeries prior to her diagnosis, doctors noted her white blood cell count was very high. At James Graham Brown Cancer Center in Louisville, Ky., doctors tried to determine why her white blood cell count was so high.
“I was there on and off for a month and did every test under the sun and they couldn’t find out what was wrong with me,” Lee said. “All the doctors were just puzzled by it.”
Despite her undiagnosed illness, Lee stayed active. She was the president of her local PTA and president of the booster club for her daughter’s soccer team. At a booster club pancake breakfast in October 2012, she found herself with very swollen hands and she couldn’t put weight on her right thigh.
After another doctor visit, a couple dozen blood samples and six weeks of waiting, Lee found out she had two types of myositis. Both types of the disease that Lee has, dermatomyositis and polymyositis, are very rare. Lee said it’s even rarer to for one person to have more than one kind of the disease.
According to The Myositis Association, the disease is more common in women than in men. The types of myositis that Lee has causes skin rashes, muscle weakness and pain. Lee’s immune system was essentially backfiring on her.
“People are always talking about your immune system and how you need to boost it,” Lee said. “Well, my immune system actually has turned on me. So, as my doctor was telling me about the disease, he told me that my high white blood cell count was eating away at my muscles. By the time we found it, I had a hole in my right thigh muscle.”
The underlying cause of the disease is unknown, according to The Myositis Association. However, the group says that some doctors believe environmental exposure can trigger the disease in certain, not yet fully defined, gene sequences. Lee said it’s possible that her father’s exposure to agent orange in Vietnam caused her disease.
To combat her myositis, Lee undergoes chemotherapy once a week, is on several immunosuppressants and does intravenous immunoglobulin treatments five days out of the month for 40 hours. Those IVIG treatments cost tens of thousands of dollars, Lee said. The treatments help with Lee’s pain and rashes. However, weakening her immune system presents Lee with another problem.
“Anytime I’m out, I’m just really fearful of anything I might pick up because I’m so susceptible to getting anything without an immune system,” Lee said.
She also participates in physical therapy with Libby Rasmussen, doctor of physical therapy at Van Diest Medical Center.
While myositis is a rare disease, Lee was able to meet others with it last year at a conference she attended with her husband. She said it was nice to be around others who could relate to her situation. However, seeing others with the disease who have oxygen tanks and walkers was a harsh reminder of what’s to come for her. Lee said her doctor told her that within five years she will likely be in a wheelchair.
“That just hit me like a ton of bricks, but it was also just amazing to be a place where somebody had the same thing I had,” Lee said. “Because so many people don’t understand what it is.”
There is no cure for myositis, only treatment. However, Lee said she is working with medical professionals to help fight the disease. She was contacted by a professor at Washington State University who is studying the link between agent orange in parents and their children having autoimmune disorders. Lee said she’s going to take part in the study.
“I’ll do anything I can,” Lee said. “It’s very unlikely that my daughter would have it, but anything I can do to help somebody down the road that would be struggling with it, I’ll do.”
For Rare Disease Day, Lee said she hopes that people will find out more about rare diseases. While her parents, who both had stage four cancer, had many support groups they could attend, those with rare diseases often go unnoticed.
“A lot of times, people with autoimmune disorders look normal. You can’t look at them and tell that they spend almost all of their days at the doctor,” Lee said. “The biggest thing for me is that people educate themselves on rare diseases and find out more about them.”
For more information on Rare Disease Day, visit rarediseaseday.org. For more information on myositis, visit the website for The Myositis Association at myositis.org.