June 6, 2024 —

Known around lupus circles as Dan the Man, Nandan (Dan) Baruah is an advocate for all people with lupus.  But he is especially focused on helping other men living with what is often considered a women’s disease. As Dan reflects on Men’s Health Month and Father’s Day, he has much to share about coping as a man, as a dad, as a provider.

Living in a Man Cave

Diagnosed in 2014, Dan was determined to ignore it and took a new job that was even more demanding than an already challenging role.  His body rebelled, but despite a bad case of shingles, Dan forged on, returning to work far too soon against doctor’s orders and not telling anyone – even his family – about his lupus. His sons didn’t know what was happening, why he was not the dad he used to be

A man in total denial, Dan was living in what he calls his physical and figurative “Man Cave.” When he emerged three years later, Dan had found what he calls his M&M’s – the means to accept his new life as a man with lupus.

Dan Lives by His M&M’s

Dan often shares this advice for other men to consider in living with lupus:

• Meditate and be Mindful of your feelings.
• Meet and connect with others; Move and exercise.
• Make something creative.
• Marvel at the Miracles of Life.
• Meaning, which Dan feels is the ultimate M, to find purpose in your life with lupus – by helping others impacted by the disease.

Five Coping C’s

Ever the eloquent wordsmith as well as a powerful motivator, Dan shares his five C’s to that help him and he hopes will help others with lupus, and men in particular, manage their lupus journey.

• Compose yourself – take care of yourself with compassion. Tell others about your journey so they can understand, empathize, and support you. It’s a much easier road when you’re not on it alone.
• Connect – find a community of people going through a similar experience. You can learn from sharing with others and find your own roadmap.
• Cooperation – You are the CEO of your care team, and your voice matters.
• Create – take your mind away from anxiety by using the part of your brain that is a creator – a painter, a writer, a gardener, a mechanic.
• Celebrate – Cultivate gratitude for every day that you are alive and for the miracles around you.

Over the last few years, Dan has taken on a few new commitments in his determination to make his lupus even more meaningful. Believing in the importance and benefit of taking part in clinical research, Dan joined the Lupus Therapeutics Patient Advocates for Patient Studies (PALS) program. In doing so, he shares his personal experience participating in several clinical trials by educating and supporting others considering entering a trial. On World Lupus Day 2024, Dan also shared the point of view of people with lupus on clinical trials at the Community Meeting hosted by the Lupus Clinical Investigators Network overseen by the LRA clinical affiliate Lupus Therapeutics.

Dan is also ensuring that patient perspectives and priorities are being shared in the drug development process as a new member of the Lupus Voices Council of the Lupus Accelerating Breakthroughs Consortium. Lupus ABC is the first public-private partnership with the U.S. Food and Drug Administration that brings together people with lupus, federal agencies, medical societies, advocacy groups, industry, academic clinical researchers, and scientists to overcome the scientific hurdles in drug development.

As a dad, Dan realizes now that sharing his journey with his kids has helped him be a better parent. “I cannot do certain physical things with them anymore, but I can do other things. And since humor always helps, I am full of dad jokes!”

“Stepping out of my lupus man cave has opened new avenues in my life. I’ve made new friends, new communities. The LRA came into my life. I have been exposed to so much I never would have known about.” He recommends that others Visit LupusResearch.org to find ways to work with the LRA.

What gives Dan hope? “Miracles. Medical research – by including patients’ voices – has changed radically for the better. I expect to see a cure in my lifetime.”

Dan invites people with lupus to reach out to him at lupus.whisperer.dan@gmail.com.