Her name was Marjorie. She was a 29-year-old from East Africa's Uganda. And after living with type 1 diabetes from the age of three, she died last year as a result of diabetes-related kidney disease.
Now, in honor of Marjorie, a New York endocrinologist who's living with type 1 himself is using her story as the backbone for a new non-profit aimed at helping people in developing countries get more resources and education about living successfully with diabetes.
Frankly, we were feeling very down about how diabetes is being addressed in the Third World after Wil Dubois' report Wednesday on the lack of ingenuity in the International Diabetes Federation's new global care guidelines.
So we're that much more excited to learn about some "real and sustainable good" happening in developing nations, where more attention to diabetes is sorely needed. Plus this effort's being led by a fellow PWD and doctor from the States, who's taking his own life experiences and skills to other parts of the world that need it so very much.
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We chatted with Jason on Wednesday about the organization he formed after Marjorie's death, his own diabetes story, and a fundraising launch event happening this evening in New York City (!)
Though he has a private practice serving healthy and well-to-do patients in Manhattan, Jason sees himself as a sort of Robin Hood who's taking his skill set and passion to help those in poorer developing countries.
All of it goes back to Marjorie, whom he met about two years ago in Uganda where she lived and he went to work to help those living with diabetes.
Diagnosing "The Scary Doctor"
Now 36, Jason was diagnosed with type 1 at age 25 during his first international trip to the Republic of Georgia, where he was researching the prevalence of HIV and hepatitis C in patients with TB. He developed a fever and chills and got sick during his surgery rotation, but at the time didn't think anything of it and blamed it on the bad borscht he'd eaten the day before.
Back in the U.S. to start his third year of medical school, Jason says he was losing weight and by the time he started pediatric rotation, he'd "dwindled to a shadow of my former self." The corners of his mouth were so dry that they sometimes bled, and he acknowledges how his appearance made children shy away from him as "the scary doctor."
No one thought diabetes, though. His grades and health suffered, until finally he went to a doctor and was rushed to the ER after having a blood sugar reading higher than 600 mg/dL. Along with being diagnosed with type 1, Jason was also diagnosed in that first month with the blood disorder aplastic anema and told that without a bone marrow biopsy he'd die. He received that biopsy, and was told that his body had been in a starvation state and his bone marrow had been destroyed in the process; it later recovered on its own, thankfully.
After that scare, Jason began his third year of medical school at Emory University and was just at the point of deciding his field of expertise. He'd had an interest in endocrinology, but hadn't settled on it until then. After his diagnosis, he doubted he'd be able to become a doctor... but that changed once he accepted the challenge.
"Emotionally, I knew there had to be a reason for my survival," he says. "Finding meaning in my own healthcare journey, led me to devote myself professionally to the care of others living with diabetes."
Jason now practices at Weill Cornell Medical Associates on the upper east side of Manhattan, and he's also an assistant professor of medicine and attending endo at Cornell Medical College in New York, NY.
What he's created with this global initiative is right up his alley, as his interests include disease management through education and lifestyle intervention, type 1 prevention, and the impact of diabetes on international health. He's been involved in various worldwide initiatives on diabetes, including efforts by the International Diabetes Federation and Global Diabetes Alliance.
It's also very much worth taking the time to read this Q&A online about this extraordinary man; it goes into more detail about his personal life, his diagnosis, and the inspirational traits of a person who's making an incredible difference worldwide.
Converging of Worlds
All of that led Jason to Uganda in 2010, where he was at a medical conference and met a woman who'd been diagnosed more than a quarter-century ago and was considered "one of the lucky ones" in that she was able to get enough insulin and blood testing supplies to allow her to survive. As much of an outrage as it is, that's not the standard (!??) in developing countries. Still, Uganda is starved for the kind of resources that would've allowed Marjorie to keep her blood glucose levels under good enough control to avoid complications.
Awaiting a kidney transplant, she relied on weekly dialysis treatments to stay alive, but even that was tough because the treatments were expensive. In the end, no matter how preventable it could've been, it just wasn't possible for Marjorie to avoid a slow and painful death. She died in July 2011.
Even during the most painful period at the end of her life, Marjorie continued her efforts to educate both patients and healthcare providers on how to better manage type 1 diabetes, hoping to prevent others from suffering her fate. She spoke at medical conferences, telling her story and fighting to change a system that had limited her own care.
Through this was born Marjorie's Fund, which aims to improve the resources and education for type 1 diabetes patients in the developing world and promote diabetes research.
"Through her memory, we can use her story so that Marjorie is continuing to educate people past the point of her death," Jason says.
Jason has made a few videos talking about his hopes for Marjorie's Fund and the global diabetes initiative he's leading. For example:
The mission of his Type 1 Diabetes Global Initiative is to empower people living with type 1 diabetes in the developing world to survive diagnosis and thrive into adulthood, without being held back by lack of insulin, supplies or necessary education. His team is working to ensure uniformity in D-management standards of care between the developed and developing world (!)
And that, Jason says, is one of the big issues — we just don't see diabetes the same in Third World countries as it's seen in the U.S. and developed nations.
A Different Definition of Diabetes?
In Uganda and developing countries, Jason says the traditional classifications of type 1 and type 2 diabetes don't apply. Instead, they refer to malnutrition diabetes as type 3.
Wait, what? Another type 3 definition?!
Well, according to Jason: this type in developing countries is not to be confused with the label we've seen Stateside attached to Alzheimer's and caregivers (also called Type Awesomes). No, this is another condition altogether that could even contain clues about the other types out there.
No one has really investigated the malnutrition category because there haven't been the resources or money, he said.
Jason goes as far as describing this work as "exciting," in that there could very well be an undiscovered autoimmune or infectious link between malnutrition-caused diabetes and type 1 as we know it.
"It's not something we see in the United States, and if we do see it we're not diagnosing it," he said. "Learning more about malnutrition and type 3 will help us discover more about type 1 and type 2. My goal, for research, is to reclassify the types of diabetes that really exist here."
With those medical details in mind, Jason is on a mission to help people in these developing countries. Without better resources, he says more people like Marjorie will survive into adulthood only to end up with preventable complications because of late diagnosis and poor D-management.
"What we're doing is allowing patients not just to survive, and then develop these complications... but to survive well," he said. "Surviving with good control, excellent and tight control of their diabetes. There's no reason why the resources we have at hand in the developed world can't be available here."
It may take a lot of effort and coordination, but that's what Jason hopes to do.
Specifically, Marjorie's Fund already has projects underway to provide education, resources and research to clinics in India, Uganda and Ethiopia. Each one works to increase the amount of glucose test strips and A1C testing supplies available in those nations, to get people more D-education materials or healthcare provider training, and to enhance type 1 screening through blood and C-peptide tests instead of just relying on clinical diagnosis.
They're also starting a new project in Rwanda, teaming up in November with Team Type 1 and its captain Phil Southerland to create awareness and help start a six-month vocational training program for teens and young adults with diabetes to help them earn money to pay for their own strips and supplies. Jason plans to be in Rwanda for the Type 1 Ride during the week of World Diabetes Day on Nov. 14.
To help pay for the creation of Marjorie's Fund and these global projects, Jason has partnered with several hospitals and researchers throughout the world. He's also running fundraisers like tonight's kickoff event scheduled from 6:30 to 8:30 p.m. at 470 Broome Street in NYC. The night's to include a silent auction with some pretty appealing items: guitars signed by Sting and Paul Simon, vacation getaways, health and wellness packages, tickets to a new Broadway musical called Kinky Boots The Musical, and tickets to Bruce Springsteen and the E Street Band and VIP seats to a Jimmy Fallon show taping.
Apparently, some celebrities are also expected to show up: our community's favorite PWD Chef Sam Talbot from Bravo's Top Chef, and both Ronald "Ronnie" Ortiz-Magro Jr. and Samantha Rae "Sammi" Giancola from MTV's Jersey Shore.
Cool lineup and it sounds like a rocking great time tonight!
And the plan is also to unveil the organization's new logo, pictured here, which includes the focus areas of India and Africa, Marjorie's favorite colors, young and old hands and one at the top with a finger stick! (look closely)
What really strikes me about this effort, though, is more than the moving story behind it and the incredible organization this doctor's creating; it's the passion you can clearly see in Jason's face and hear in his voice as he talks about the struggles PWDs face in developing nations.
Watching this video, I was fascinated to see Jason talk about the challenges he personally found in managing his diabetes while he was visiting Uganda, where the hot climate is so unfamiliarly hot and he doesn't have the same foods and exercise options that he does in the U.S.
"It's an especially challenging place to keep myself in good control... so looking at other diabetics who are here all the time and don't have the resources I have, thinking about how they're going to control their diabetes, is just really astounding to me and really makes me sad. By being here on the ground, by learning how to manage it within my own body, I feel I'm perhaps learning how to manage it better in the patients who live here full-time," he says.
Of course, Jason isn't alone in launching these kinds of global help projects. Many others are making efforts, too. But hearing his story and seeing what Marjorie's Fund is all about, witnessing people like this "on the ground" working to make a difference, it all hits home and gets me pretty excited about the changes we can achieve if we work together throughout the world.