UP featured a couple of firsts in November … we welcomed two guys who are advocates for men’s health, and our first guest from Africa!
“Sometime in 2017, two men, both living with diabetes, talked about the lack of safe spaces for males to communicate, express themselves, and open up.”
The result was the non-profit community support organization Bolus Maximus, described by its founders Matt Tarro and Brandon A. Denson …
“BOLUS: A single dose of a drug or other medicinal preparation given all at once. Term used when people with diabetes associate their insulin intake with the food they are eating.
MAXIMUS: The name ‘Maximus’ means ‘The Greatest’ and is of Latin origin. In Bolus Maximus, it focuses on the belief that men NEED to be the greatest example of strength — all the time. Our goal is to break the stigmatism and have sharing our emotions play a larger role in our lives with diabetes.”
Then two guys came from very different backgrounds. A stand-out linebacker and walk-on at Michigan State, Brandon has played football while living with diabetes (and earned a Bachelor’s degree in Criminal Justice while he was at it). He was also the first Black man with T1D to compete on an aired episode of American Ninja Warrior. Matt spent 10 years in digital advertising, media, and marketing and has a background in creative design and brand development. When the two came together to talk about their shared health condition, they formulated a plan, as Matt says, “to make some noise for men with diabetes. We’re not exclusive to males, but we are driven to help males. We know that men need to talk about their emotions. They need to talk about diabetes. We need to be a little more vulnerable.
“I got a really nice message the other day from a mother of a young boy with diabetes; she said, ‘I’m very excited, you’re doing what you’re doing.’ To know that mother now knows that in the future, if her son needs help from a male perspective, and it can’t be done through the household or the healthcare system, that there’s going to be a community for him …”
Matt & Brandon’s bottom line? “Remember: it’s OK to ask for help, show emotions, or have bad days. Let’s talk about tough stuff.”
Ehlers-Danlos Syndrome (EDS) sufferers often go for years undiagnosed and untreated — because it’s a rare disease not well known by doctors and not often in the realm of specialists. Symptoms include overly flexible joints that can easily dislocate, and skin that’s translucent, elastic, and bruises easily.
We’re talking now about the United States, where fewer than 200,000 cases are diagnosed annually.
Now imagine growing up in Lesotho, Africa — population just over 2 million. No doctors to recognize this rare disease, so few people suffering from it. But by age 14, Nthabeleng Ramoeli would wake up with dislocated limbs. The doctors were puzzled. She would eat a little and her stomach would immediately swell to the point she could dislocate her ribcage just by pushing up. Before long she was virtually unable to eat, walk, or talk.
But in 2014, Nthabeleng was in an accident in which she sustained over 10 broken bones down her spine, among other injuries. A spinal specialist was able to recognize that EDS had saved her life: her joints were so hypermobile, the impact hadn’t shattered her spinal cord. After rehab, she could walk again…and she had a diagnosis.
The diagnosis was a relief in many ways, Nthabeleng concedes. “It’s a journey. Once you’ve got the diagnosis, I believe that’s when your life starts,” she says. And she urges, “Start going deeper and understanding the condition — but away from yourself. Differentiate. It’s not a you thing. It’s the condition versus you. So you need to make sure that you separate the two.”
Nthabeleng knew she wanted to advocate for other patients, but not just about EDS. Because there are so few resources to help people with rare diseases in her corner of the world, she founded Rare Diseases Lesotho Association (RDLA), which has grown into the Rare Diseases African Alliance.
Come listen to the fascinating story of the dynamic Nthabeleng Ramoeli. “There’s one piece of advice I wish someone had told me: It’s okay not to be okay. And when you’re not okay, take time out. Even if it means that you take a whole week in bed, turning and tossing because you have fatigue: do it. If people around you don’t understand, it is on them. It’s not a you thing; they’ll get over it. Eventually they’ll start understanding who you are. And you’ll attract people who actually do understand you.”