Danielle Bourgeon, a 35-year-old creative director, was diagnosed at Penn Medicine with multiple sclerosis (MS) over 10 years ago. The condition changed her life.
"It was really rough for me and it got really dark really fast, particularly when I was not able to walk," she says. "I know it's not a death sentence, but it feels like that."
MS is a disease that effects the nervous system causing the immune system to attack healthy nerves and their surrounding myelin, which damages the body's normal function over time. Symptoms include vision loss, numbness, weakness, fatigue, and pain to name a few.
MS affects nearly 1 million people in the United States, especially women in their 20s and 30s. In 2009, Danielle became one of these individuals.
"I was completely paralyzed on my left side," Danielle says.
"You don't know what it's going to take from you, you don't know how it's going to affect you, and living with that unknown and that level uncertainty is very scary," she says.
There is a growing number of young people who are being diagnosed with MS each year. Even though there is no cure, research and clinical advances have improved the ability to accurately diagnose MS, allowing for earlier diagnosis and treatment which can help patients manage symptoms and decrease the risk for disability, says Dina Jacobs, MD, Clinical Director of the Penn MS and Related Disorders Program.
There are currently over 22 different FDA approved MS treatments. According to Jacobs, this includes several new treatments improving the lives of patients living with the disease.
"For me, it was really important to tell this story."
Danielle experienced her first exacerbation on orientation day in college. Despite her circumstances, she studied abroad in Italy for three weeks, then later returned for a 3-month marketing internship with Jennifer Tattanelli, an Italian atelier. She graduated as valedictorian from The Art Institute of Philadelphia.
"I am so thankful for my experience at Penn. If it weren't for Dr. Jacobs, I don't know where I'd be," she says.
"Everyone I encountered at Penn has been amazing. I'm so grateful. When you're at Penn you really feel like you are cared for and not a number."
Danielle trained as a ballet dancer for 17 years before an injury, which was unrelated to MS, halted her professional career.
Over the years, Danielle has worked with Dr. Jacobs to find her way back to her love of dance.
"It took five years after my last exacerbation to try ballet again. In the beginning, I dealt with a lot of spasticity and seizing up in my muscles. There are still certain steps that showcase my neurological deficiencies, but for the most part people are unaware of my MS. "
Danielle recently choreographed a dance sequence about her story of resilience, called Made Stronger (below).
She eloquently dances to the hit song, "Say Something" by A Great Big World, showcasing her story of triumph with the use of a walker and collaborating with a fellow dancer.
Last year, Danielle performed as an extra in Pennsylvania Ballet's Don Quixote and danced in her first full-length ballet in pointe shoes in 14 years, with Dance Del Bello in A Christmas Carol.
"I want to live my life as much as I can."
Danielle is hopeful because of all of the advances in MS care. "The medications have higher efficacy and they're really making more of an impact."
New treatments, a proper diet, exercise, and stress control have helped Danielle return to dancing and sharing her art with audiences.
One of the many struggles that MS patients face is fatigue and limitations to their normal daily activities. Adopting a regular exercise routine can help manage symptoms.
"Through dance and exercise I've regained connections in my brain to my extremities. My heat intolerance has decreased; my fatigue threshold has increased. I can do things longer. My goal is to inspire other patients to incorporate exercise into their lives and let them know they're not alone in this journey."
Danielle helps newly diagnosed MS patients, assuring them that they can still live a healthy life with their condition. She has spoken at provider and patient programs at Penn Medicine as well.
"My goal is to continue to reach out to the MS community through speaking engagements and support groups because together we are all 'Made Stronger'," she says.
Learn more about the Penn Multiple Sclerosis Center and clinical trials.