Anyone with inflammatory bowel disease has to be strong to handle the day-to-day challenges of living with the condition.
You need even more moxie to take the extra step of being public about this serious and sometimes debilitating intestinal condition. One of those courageous few who’ve stepped out to talk about dealing with IBD – which includes conditions such as Crohn’s disease and ulcerative colitis – is Dane Johnson.
An actor, model and now holistic nutritionist, Dane was first diagnosed with Crohn’s disease and colitis soon after finishing college. Four years later, after recovering from a life-threatening episode that left him hospitalized, Dane joined 23andMe’s IBD Study and began talking publicly about his journey with Crohn’s and colitis. Now a year later, we wanted to take a few moments to catch up with Dane and see what’s new. In the midst of his battle with Crohn’s, Dane, who is an athletic 6’1” was down to 125 pounds, but since then he has made a full recovery, and gained back 55 pounds of healthy weight.
Dane has turned a corner and is back to being very active. His doctor recently informed him that his intestinal tract is showing a 75 percent decrease in visual signs of the disease. 23andMe: How are you doing? What’s changed since we last talked?
Dane: “I’m doing amazing. My energy is great and I’ve been able to take on traveling too. I graduated from school as a holistic nutritionist in January. I have since incorporated my own business consulting clients with IBD on a holistic approach to managing their health and wellness goals. I’m also still modeling and acting. ”
23andMe: Crohn’s and colitis leaves a lot of people feeling isolated and alone. Often the last thing they want to do is tell someone about what they’re going through. What was it like to speak publicly about your own story?
Dane: “Extremely hard! There’s no way getting around that, but it’s taught me a lot about people. People tend to embrace those who share their truth. Actually it becomes empowering once you decide to take your situation into your own hands because today everyone seems to know someone dealing with something similar.”
23andMe: “Why did you decide to talk so openly about everything you’re going through?”
Dane: “I needed a way out, and surgery was the only one presented to me. I came to the conclusion that a bit of shame was nothing in comparison. It ended up being a great way to create solutions as I found answers and great connection by talking about it. If I had kept it to myself I am certain I’d still be very sick and I would have never gone back to school for natural medicine or started my own business.”
23andMe: “What kind of feedback have you gotten from people?”
Dane: “I hear that I’ve inspired a lot of people, who hear about my story. People tend to be thankful about how open I am. I’ve been surprised that more people are dealing with a similar situation than I thought. Every time it comes up in conversation, there’s always someone who is dealing with it themselves or is close to someone who is. ”
23andMe: “Has it been helpful for you to talk about it and to meet others with IBD?”
Dane: “Extremely. It always makes me feel less alone in the world, and it takes the pressure and anxiety away when I meet people who can relate.
23andMe: Why did you decide to join 23andMe’s IBD Research Study?
Dane: “I wanted a place to share my experience and have my story and genes be of use for others. It was a no-brainer that I wanted to participate in the study.”
23andMe: “Have you had any episodes over the last year?”
Dane: “Yes. I tend to push the limits in my life and that has a double edged sword effect. I’ve travelled to Thailand, Cambodia, and Mexico, twice, as well as all over the U.S. since my recovery. Anyone who deals with IBD knows traveling and staying in foreign environments is not easy, almost impossible at first glance. However through these experiences I’ve learned a lot about myself and how to manage my health.”
23andMe: “What are you doing for work, are you still modeling or acting? How does your condition impact what you do?”
Dane: “I am still modeling and doing a bit of acting, while focusing on entrepreneurial efforts which are very exciting. ”
23andMe: “Do you have suggestions for other young people with the condition on how best to approach the day-to-day?”
Dane: “Consistency and building positive healing energy in your life is the key to success. Starting out with a consistent morning and night is a great way to lower symptoms and improve your ability to manage your health. Get good at knowing your triggers. It’s more specific than food. Surround yourself with positivity. Don’t be in a situation you really don’t want to be in.”
23andMe: “Looking at the future what are your hopes about the current IBD research efforts?
Dane: “I’m hopeful that we can learn the root causes of IBD or learn about what can trigger symptoms. Most of us don’t become aware of our illness until years after it’s taking root in our bodies. Earlier knowledge will be a game changer.”