When fashion designer Michael Kuluva of Tumbler and Tipsy first noticed severe pain in his back, he thought he had kidney stones. Then one day in 2011, while walking from class at The Fashion Institute of Design & Merchandising to his car, his back gave out. He went to a urologist who then referred him to a rheumatologist.
“My whole body lit up like a Christmas tree” Michael says of the test results from his rheumatologist that showed significant inflammation. The rheumatologist misdiagnosed Michael with psoriatic arthritis. Luckily his application to go to the Mayo Clinic was accepted and after a battery of tests there, he was correctly diagnosed with rheumatoid arthritis (RA) at age 28.
Now at age 33, Michael has chosen to “come out” as a person successfully living with RA to help others, particularly younger people who may be recently diagnosed. “I was secretive about the disease because of my career. I didn’t want to be pigeon-holed or stigmatized as I’d seen happen to others,” Michael says. “But now I hear more and more about young people having arthritis and I remember how frustrated I was when I was diagnosed because of all the things I didn’t know, so I want to speak out.”
He chose CreakyJoints to share his story after visiting the website and liking what he saw. “Awareness is so important and I like that CreakyJoints is about getting people to feel better,” Michael says. “I want to encourage people to go to CreakyJoints.org or use their ArthritisPower app, so they are comfortable asking questions about their disease and its impact on them, instead of freaking out after trying to Google answers and problem-solve on their own.”
Michael has been in and out of remission, and though he sometimes has pain and fatigue, he is managing a very full schedule and enjoying his career, which takes him all around the country and throughout the world as the fashion industry is a demanding one. He tries to walk every day to help manage his symptoms, and has shown his collections at New York Fashion Week every year since 2012. He also works with major companies such as Interscope Records and Reading Rainbow to encourage kids to read.
The main message he wants to deliver to people with arthritis, particularly the newly diagnosed, is to be patient in learning about your disease and how it affects you. “You will have good and bad days – every day is different,” he says, but it is possible to live your life on your terms with arthritis. “I don’t let my RA define me.”
CreakyJoints is dedicated to sharing strength and experience with each other as we manage RA or any of the other related forms of arthritis. Membership with CreakyJoints is free, and includes an email newsletter with news, updates, patient and physician perspectives, as well as opportunities to participate in patient-centered research.