Late last year, the U.S. Food and Drug Administration approved the injection Tzield (teplizumab-mzwv), a drug which may help delay the onset of type 1 diabetes by as much as two years. The drug is currently approved for those ages 8 and older who have a close family member with type 1 diabetes. In this personal reflection, Erin Collins Richey, 37, who has lived with type 1 for three decades, reflects on her diabetes journey and if she would have taken the injection if given the chance. This is her story.
I have a tattoo on my inner wrist that reads “I am greater than my highs and lows.” All my life (well, since I was 7 at least), I’ve been focused on a number. A perfect blood sugar, a perfect A1C reading. I’ve wanted to be perfect to the point where it stresses me out to the extreme.
I was diagnosed with type 1 diabetes when I was 7 years old. My cousin, who was 2 at the time, was diagnosed about six months before me. Reading about Tzield makes me think I could have potentially been a candidate because I had a known family connection at the time. If I could have delayed my diabetes diagnosis by a minute, an hour, anything, I definitely would have.
Balancing hope and skepticism
Growing up, I was told so many times that we are right around the corner from a cure. I don’t think anyone is wrong for being optimistic, but I have become highly skeptical because it helps keep me from disappointment.
That’s not to say things haven’t really changed since I was diagnosed. I’ve gone from pricking my finger up to six times a day to staring at my phone to find out what my blood sugar is. Closed-loop insulin pumps have made such a difference for me to know exactly what my blood sugar is at any time. The funny thing is that I was initially reluctant to get one—I didn’t want another hip attachment. Now, it’s really made me freer more than tied me down.
When I think about being younger and living with diabetes, there was so much uncertainty and fear for me. And not only for me, but also my family who worried about my blood sugar on trips, when I would go to sleep, and probably many more times I don’t even know about.
I have struggled with all the things you read about with diabetics. Anxiety, depression, PTSD. I’ve even had “diabulimia,” where I figured out if my blood sugars were high, I’d be thinner. It took focusing on having a family and wanting to have a baby to make diabetes management look very different for me.
Hope for my son’s future
There have been times when I’ve been super active and engaged in the diabetes community, from mentoring younger children with the condition to running social media and in-person support groups for those living with type 1. Other times, for my own mental health, I’ve had to take a step back and focus on myself and my own medical management.
My family and I have been invited to participate in a lot of research studies over the years. One of them was about genetic testing for my brother to determine if he was at risk for type 1 diabetes. He had always said no, that he didn’t want to know because at the time, it wouldn’t really make any difference to how he lives his life.
Now, knowing that if there are genetic markers that could indicate type 1, this drug could possibly delay that onset, that might change things for him. It changes things for me. I had always wanted a child, and I struggled with whether the decision was selfish because I was afraid of passing on my condition. I did have a son, and it was an exciting but scary time for me because I had new worries in managing my condition and growing a baby!
The idea that this drug is out there and could potentially benefit my son in any way provides a lot of peace of mind for me.
When I reflect on this new opportunity for younger people, I feel a lot of excitement. I am thankful for what modern medicine has done for me and that there are researchers out there who are trying to help people like me. I watch every new thing that comes out with a little bit of reflection about how my life with type 1 has changed.
Every step that we take, we are getting closer to a cure. That brings me hope.