Aimee Ackell has been living with a chronic autoimmune disease for two decades and has learned to not only cope with it, but to persevere in order to survive. The Glen Head resident recently self-published her book Butterfly Girl: My Lupus Journey as a way to outline her experiences and inspire others who face similar challenges.
Ackell was diagnosed with systemic lupus erythematosus—an inflammatory disease that causes the immune system to attack its own tissues—in February 1996, at age 30. The doctors weren’t sure what it was at first, initially suspecting Lyme’s disease. The irony is, her older sister died from the disease eight years prior, at the age of 30.
“I woke up one morning and my knees were the size of bowling balls,” said Ackell of the first sign of lupus.
A gymnast growing up, she said she was always healthy and active.
“Lupus is a mysterious and silent disease. It attacks all of the organs, the brain, the kidneys and the heart, and the connective tissues. It causes you to lose your hair and your body breaks out in rashes all over,” said Ackell.
Since that first symptom more than 20 years ago, Ackell has experienced a lot of health problems and pain, caused both by the disease and the medications used to treat it. She said she had a grand mal seizure as a result of an allergic reaction to medication. She also had a mini-stroke caused by lupus.
The disease, she believes, is both hereditary and environmental; she was exposed to asbestos while teaching in her 20s and became ill, which she suspects could have been a trigger. There is no cure for lupus.
Other symptoms of the disease are “brain fog” and fatigue, and all of this can lead to feeling emotionally “down.”
“When my sister had it, I didn’t know much about it and there wasn’t a lot of information available about lupus,” said Ackell.
She did her own research and eventually planned her own course of treatment: exercise.
“Swimming saved my life,” said Ackell.
Several years ago, her body was so inflamed and she was in so much pain that she couldn’t walk. The doctors wanted to replace her hips. Being an athlete and educator, she knew there had to be another option.
“I started swimming and did that for two years. Then I started working up to walking, running 5Ks and building up my core,” she said. “Exercise is key, as is drinking lots of water to flush the kidneys. It’s about creating a healthy lifestyle. Most people can do it, they just have to be shown how to do it.”
Her book aims to bring hope, inspiration and guidance to those living with lupus or other auto-immune disorders, though she said, “anyone facing challenges will be inspired.”
Ackell has set up a fund in honor of her sister, the Ann Caroline Corredy Fund, through the Long Island Community Foundation. All donations go to lupus research. She donates her time and financial resources every year to various lupus organizations for research in hope that a cure can be found.
“The research is really important. We need to find a good drug or a cure,” she said.
And in the 20 years that she has been living with lupus, it is not the drugs that have helped her cope, but her own perseverance. In addition to exercising daily, Ackell has also turned to transcendental meditation to help her find balance.
“It’s changed my life. I’ve gotten rid of a lot of the fear and anxiety and feel more balanced. It’s transforming.”
She has managed to overcome many of the struggles associated with the disease. She went back to school for a second master’s degree and has taken writing classes. She published a children’s e-book prior to this one, Anabel and Lenny’s Magical Quest and has plans for two more books. The next will be a health journal that people can take on doctor’s visits to help them remember what was discussed and the second will be more about her journey. She is also starting to get into motivational speaking.
“You have to be your own advocate, no matter what the disease. I believe that the more you know, the better able you are to help yourself and others. It’s important to research as much as possible,” she said. “It’s a large task to handle, but if you take baby steps to do what you want to do, you can accomplish what you want to.”