UI Health patient fights rare disease with art, advocacy
From pain, Megan Howard draws inspiration for her artwork.
Howard, a patient at UI Health, has Behcet’s disease, a rare autoimmune disease that causes inflammation in the blood vessels. She’s raising awareness for the condition by entering her artwork in the RareArtist.org contest, sponsored by the EveryLife Foundation for Rare Diseases. Voting runs through Dec. 22.
The winner will receive a trip to Washington, D.C., to speak with Congress during Rare Disease Week in February.
“My main goal is to get more awareness about the disease,” says Howard, 30, who lives on Chicago’s North Side.
“I’m winning just by getting more people to know what it is. Awareness is the first step to understanding and, hopefully, treatment.”
About one in 500,000 people in the United States has Behcet’s.
“Some people have it in a very mild form and are able to work and lead a fairly regular lifestyle,” she said. “Other people like me have been affected in a much more devastating way.”
The lack of awareness meant a long path to diagnosis for Howard.
She experienced unexplained pain as a child and frequently suffered from colds and bloody noses. When she was 16, she developed bumps that became ulcers. Other symptoms included fatigue, joint pain, headaches and difficulty sleeping.
“I could no longer tolerate playing soccer, which was something I not only enjoyed, but was very good at,” she said.
She finally found a dermatologist who diagnosed Behcet’s disease and sent her to the Cleveland Clinic for treatment.
“I quickly started doing better, and was able to get back to life and finish college,” she said, graduating from University of Akron. “With a new gratitude towards life, I went on to graduate school, determined to use the knowledge and insight gained from my personal hardships to help others.”
As she finished her thesis for a master’s in art therapy from Adler University, her symptoms worsened.
“I had been dealing with Behcet’s long enough to understand that there is no cure, which meant I would probably just have to treat each symptom and hope for a better quality of life,” she said.
A new passion for advocacy
Doctors told her that her central, autonomic, peripheral nervous systems were now affected, leading to an even rarer condition of neuro-Behcet’s. She can no longer stand up for more than a few minutes and needs a feeding tube.
About two years ago, she started receiving treatment at UI Health under the direction of William Ennis, clinical professor of surgery, and Nadera Sweiss, associate professor of rheumatology.
“These two professionals are an asset to UI Health, and I have comfort in knowing I have such skilled physicians helping me fight this disease,” she said.
During recent hospitalizations and treatment for a leg wound, she created “Screaming in Pain,” the artwork she submitted for the Rare Artist contest.
“I used my art when I was strong enough to help distract me from the reality I was living,” she said.
“Art is a way of expressing what I’m going through. On bad days, I am still able to reach over and draw in my journal. On better days, I enjoy doing glasswork.”
She’s found a passion for advocacy and raising awareness of Behcet’s.
“I continue to put all of my limited energy into fighting for a better future for people with Behcet’s,” she said.
“I have two choices: give up, or keep fighting. I am a fighter. What keeps me going is a love and gratitude for life that has only been enhanced by facing so much hardship.”