There are many different ways of dealing with the daunting feeling of being diagnosed with a consuming chronic illness like diabetes.
For Mary Rooney, a fellow type 1 diagnosed as an adult in March 2011, getting involved in the research side was one of the best diabetes decisions she made.
While the 30-something (who happens to live nearby here in San Francisco) admits to being pretty scared at diagnosis, she drew from her own experience working in research on child psychology to inspire her to enroll in a clinical study that was moving forward from the mouse stage to human trials -- and Mary was lucky enough to be Patient #1 in that particular trial!
In turn, she now hopes to inspire more people to get involved...
A Guest Post by Mary Rooney
"Some people make things happen, some watch things happen, while others wonder what happened." - Gaelic Proverb
In 2011, I was 35 years old, completing my advanced degree in psychology and getting ready to launch my career and get started with "the rest of my life." But after weeks of losing weight, always being thirsty, having blurry vision that would come and go, and generally feeling run-down, I knew something wasn't right. Type 1 diabetes was the furthest from my mind, though.
Initially, I was in a state of shock. I didn't realize that you could be diagnosed with type 1 diabetes as an adult! My first thoughts were "This sucks" and "This can't possibly be happening," but I knew I couldn't just stay in a state of denial and disappointment forever. As I dove into diabetes education classes and learned about my role in managing the disease, it became clear to me that diabetes wasn't just happening to me, but that I could happen to diabetes.
Very early on after learning about type 1, I knew that there had to be researchers out there looking to halt the autoimmune attack, and preserve as many beta cells as possible. How did I know this? I'm a researcher myself, at the University of California, San Francisco (UCSF)!
I spend my days planning and executing research studies around kids with Attention Deficit Hyperactivity Disorder (ADHD), and looking for ways to improve their outcomes. I already knew about JDRF research thanks to having a childhood friend who was diagnosed with type 1, and had long followed advances in treatments like faster-acting insulins, pumps, and continuous glucose monitors (CGMs).
But there had to be more, I thought, and maybe this was my chance to contribute to the science like so many had done before me and find something that could stem my own disease progression.
I started my Internet search using keywords like "newly diagnosed" and "stop disease progression," looking for clinical trials in type 1 diabetes. Quickly a wealth of information came up on www.trialnet.org and www.clinicaltrials.gov, and I discovered three clinical trials being conducted right at my own university.
One of them in particular, the Phase 1 Treg study, really appealed to me. I liked the fact that this experimental treatment involved using my own regulatory T-cells, which would be expanded in a lab and then re-infused. The theory behind this study really made sense to me — that regulatory T-cells are like the parents of the immune system. They tell other T-cells, the "child" T-cells, where to go and what to do. The theory in type 1 diabetes is that there aren't enough regulatory T-cells, so those other child-like T-cells were running amuck. As a child psychologist, this made perfect sense to me. And it was clear we needed more parents!
The Treg study protocol had already been used with mice successfully. But mice are cured all the time by experimental treatments for type 1, and that's no guarantee the treatment will work in humans. To figure out whether it might work in humans, the first step is a Phase 1 clinical trial that looks at the safety of the treatment in humans. As with any experimental treatment, there had to be a patient number one.
That was me!
By being that first patient, I knew I was taking a chance. And I have to be honest: I was scared. My family was worried, too. I calmed their fears and my own by recognizing that the benefits could be equal to or greater than the risks.
If the study was successful, my beta cells would continue to make insulin for a longer period of time — and I would extend my "honeymoon phase." I had read about longer honeymoon periods resulting in a lower risk of diabetes complications in the future. Participating in this study could really be a game-changer! Not only for me, but maybe my experience would also help others in the future. It seemed like a chance worth taking.
There also seemed to be some other upsides: I would have access to diabetes educators who would adjust my insulin levels and coach me on how to manage my disease. (Sort of like I do with parents who have kids with ADHD — it's great to have an expert in your corner.) I wanted to do something to take charge of the situation.
Participating in the trial was demanding at times, and required many blood draws, an overnight hospital stay, follow-up study visits, and careful logging of my food and insulin doses. But overall, the experience was very positive. I've had no negative side effects from the Treg infusion, and the frequent monitoring and feedback that I received from the study's diabetes educators is something that I would not have had access to otherwise. Participating in a clinical trial so close to the time when I was diagnosed also really helped me develop a proactive mindset when it comes to my diabetes management. It gave me the confidence to advocate for an insulin pump within 6 months of my diagnosis, and recently I added a Dexcom CGM to further tighten my control.
Three years after that research study, I am still in the "honeymoon phase" which seldom lasts more than a year.
Of course, I don't know for sure whether the additional T-cells that I received from the clinical trial have impacted my outcomes, but I will say that I am still producing a fair amount of my own insulin. Recently, I saw the study results presented at the American Diabetes Association's 74th Scientific Sessions conference in San Francisco. It was a bit surreal seeing myself represented on a slide as a "subject" in a "cohort," but it was encouraging to see that some other participants in the study seemed to have outcomes similar to mine. Researchers are going to continue to add more participants in the Phase 2 Treg trial that is starting soon.
As these studies move forward and I look back, I feel good about my role in advancing treatments for type 1 diabetes. And I am encouraged by other members of the type 1 community who are contributing to this research through their participation as well.
There are still many days when I feel like diabetes is in charge — like when my blood sugar goes low during a therapy session and I need to explain to my hyperactive 8-year-old patient why it's okay for me to eat candy right now! But by taking a proactive role and taking a chance early on, I have this evidence that I can look back on and say to myself, "I can do this." There are things I can do, and have done, to not let this disease control me. I work hard every day to control my disease, and I'm determined to continue to happen to diabetes — for myself and hopefully for others down the road.
Wow, thanks for sharing your story, Mary, and for being one of the first "guinea pig" human participants in that promising study. Hopefully your honeymoon rolls on, for as long as possible!