"Move it or Fuse it"
Ever since she was a child, Michelle D. has made an effort to lead a healthy and active lifestyle.
“I’ve always tried to make sure that I’m doing something healthy -- going to the gym, walking, running, backpacking across Europe,” says Michelle.
Despite being active, Michelle, 42, has faced puzzling health issues from the time she young. During her childhood, gastro-intestinal infections landed her in the hospital on several occasions. And when Michelle was in high school, she would sometimes inexplicably wake up with one very swollen knee. Her pediatricians were stumped.
Born and raised in Canton, Ohio, Michelle went onto to the University of Akron where she earned a degree in film and television, and began a television career. While attending film school in England, Michelle traveled throughout Europe. It was the experience of a lifetime, but afterward she was diagnosed with and treated for an intestinal parasite. Unfortunately for Michelle, this was just the beginning of her health issues.
When Michelle was 31, her gastro-intestinal problems resurfaced, only this time accompanied by back pain and shortness of breath. And one morning she woke up to find one of her toes had swollen to three times its normal size, a symptom she hadn’t experienced since she was a teenager.
A rheumatologist misdiagnosed Michelle with a form of oligoarthropathy, and her condition took a turn for the worse.
“My hips were hurting, my shoulders were hurting, my neck, and especially the middle of my back,” she says.
A friend casually commented that Michelle didn’t look well, and asked how she was doing. After Michelle described her symptoms, her friend said it sounded like ankylosing spondylitis (AS), a condition her brother had.
"I realized my mom and sister have this, and many of my close relatives suffer from conditions directly related to this disease"
When Michelle visited another rheumatologist, she tested positive for the spondylitis gene. After doing research, Michelle learned that AS is a form of spondyloarthritis, a chronic, inflammatory arthritis with a strong genetic predisposition. It affects joints in the spine and the sacroilium in the pelvis, causing the eventual fusion of the spine. Complete fusion results in total rigidity of the spine.
“I realized my mom and sister have this, and many of my close relatives suffer from conditions directly related to this disease,” Michelle says.
Michelle became very involved with the Spondylitis Association of America. She ran support groups, participated in disease studies, connected with other AS patients, and met Dr. Mohammed Khan, one of the leading AS physicians who suffers from the condition himself.
Michelle continued to lead a busy lifestyle and pursue a successful career. She got married, and worked for a major television network in the Chicago area for several years. But, as the media industry began to tighten its belt and Michelle’s hours were reduced, she began to devote all her time to running her side business, Mimi Productions, a television, video and production company.
Managing her own business meant sacrificing the medical coverage she had received through the union when she worked for the network. To treat her condition, Michelle relied on several medications; the financial burden became too much.
“The costs just kept adding up — it’s dramatic,” she says. “If I don’t take my medication, I’m in so much pain it’s unbelievable and I can’t work.”
Contacts at the Spondylitis Association of America told Michelle about the Patient Access Network Foundation, and Michelle was able to qualify for assistance to help pay for her medication.
“The Patient Access Network Foundation covers my entire monthly co-pay, which is almost $400 a month. It was a godsend,” Michelle says. “Not only is my pain under control, but I don’t have to worry about where the money is going to come from.”
Today, Michelle continues to run Mimi Productions, and is back to working out, and staying fit.
“The worst thing you can do for AS is to be inactive,” says Michelle. “You need move it or fuse it!”
Without proper and consistent treatment, Michelle’s disease would progress at a much faster rate to the point where her spine would become completely fused, rendering her disabled.
“All I ever really wanted is to be normal, and lead a normal life,” says Michelle. “And, thanks to the help I receive from the Patient Access Network Foundation, I can.”