Next up in our series of interviews with the winners of our 2016 DiabetesMine Patient Voices Scholarship Contest is a Baltimore woman who's been at this type 1 game for more than a quarter-century and comes from family line of T1Ds stretching back a couple generations.
Meet Molly Schreiber, who has not only lived with type 1 since age 8 but also manages several other chronic conditions. She works in pediatric care, and takes her advocacy to the broader health condition stage. Molly recently shared her health advocacy story on the WEGO Health Blog.
And today, we're excited to feature her here at the 'Mine as one of our 10 Patient Voices winners who will be attending our annual DiabetesMine Innovation Summit in San Francisco this Fall on scholarship. Hello, Molly...
An Interview with Molly Schreiber
DM) First, can you tell us about your start with diabetes?
I grew up with type 1 diabetes around me. My paternal grandfather, my father, and my paternal cousin all have the disease. I remember when I was really little I would sometimes have nightmares about getting diabetes. My dad would always tell me that there was a one in a million chance. Well, in the summer of 1988, when I was 8, I got poison ivy. It turned into lethargy, excessive drinking, decreased eating, etc. Multiple pediatrician visits followed and finally my dad decided to test my blood sugar at home. I was lucky; it was only in the 230s. I was immediately admitted to a local hospital and have pretty much managed my disease on my own since.
What was it like growing up with your dad and grandpa also having diabetes? Did they intervene at all?
My father always had my mother give him his shots, manage his meals, etc., but when it came to me, he insisted on me being fiercely independent, insisted on me taking care of myself. I definitely think I was lucky that my dad knew how to test my blood sugar when my pediatrician didn't -- things could have been much worse. Because my parents knew so much about the disease, I pretty much managed my own diabetes from day one. I always gave myself my injections, tested my own blood sugar. Sure as a teenager, I would make up numbers in those lovely testing logbooks, but for the most part I did OK. I think managing my disease myself was really important. I see parents now that view their child's blood sugar on their phone, finger stick a few times a night, etc. As a parent, I can't say what I would do, but I imagine I would be the same way. But I do think it's important to let your child manage their disease as early as possible.
If you don't mind us asking, how is your dad faring with his diabetes?
My father has had type 1 for almost 60 years. He refuses to entertain the idea of a pump or CGM. He does finger sticks and needles (no pens either). But he's also been stuck in a routine of what to eat, when to eat, fear of an unpredictable event. That's where I think technology really gives us diabetics freedom. I've tried to convey this to my dad but he says as long as his A1C is in the 5's, he's fine!
You’re living with a few other autoimmune conditions, right?
Yes, it’s been 28 years for type 1, but RA (Rheumatoid Arthritis) for only 4 years and I also have Hashimoto's Disease (thyroid). Like type 1 diabetes, RA is an autoimmune disease. The chance of having more than one autoimmune disease is significant.
RA and diabetes really don't get along -- RA can cause an immense amount of pain, which raises my blood sugar. I actually have a basal rate on my pump for the evenings when my pain is at its worst. Steroids are commonly prescribed for RA, most people need them to function. For the most part, I refuse them. Having to bolus insulin for a pill is just not something I want to do. My endo insisted on developing a "steroid plan," similar to a sickness plan. She wants me to know that if I need the steroids, they can be an option for me. Pain medications are filtered through the liver or kidneys which are already at risk because of diabetes. Most of the medications used to treat RA, can lower your immune system. With my immune system already compromised from diabetes, I have to be especially careful. I have gotten sick frequently and have to go on antibiotics often.
Unfortunately, there aren't a lot of resources out there that cover RA and diabetes together. Rick Phillips, a fellow advocate, unfortunately has both diseases as well. His site, RADiabetes.com, is one of the only resources I've found. He and I have connected with a few people with both diseases. We do get a little too excited when we find another person like us "out in the wild"!
What do you do professionally?
I work full-time for a pediatric specialty hospital in Baltimore, MD. I am a program coordinator for our Weigh Smart® program which is a multidisciplinary weight management program for children to acquire healthy eating and exercise habits to last a lifetime.
The program I work with is for kids, ages 2-17, who are overweight /obese. The program is multidisciplinary -- psychology, nutrition, medicine, and physical therapy. The term "prediabetes" is something I hear every day at work. Parents are terrified when their pediatrician says their child is prediabetic. The co-morbidities of being overweight with hypertension, cardiovascular disease, stroke, sleep apnea, etc. aren't viewed as being as serious as prediabetes by a lot of our families. On a positive note, many children who do well in our program will lower their fasting glucose, insulin, and A1c lab levels. We have a separate endo clinic where the majority of our type 1 and type 2 children are seen.
What’s your involvement in the Diabetes Online Commuity (DOC)?
I write a blog called And Then You're at Jax, which is about my life with type 1 diabetes as well as Rheumatoid Arthritis. I'm active on Twitter as @mollyschreiber, and also on Facebook. I find the relationships I've made online, with people from all over the world with varying medical conditions, to be invaluable. I think a newly diagnosed patient has a wealth of resources and a vibrant community at their fingertips -- I'd like to work on making that more accessible to patients. I see a lot of "I wish I had known about these communities when I was first diagnosed."
Any particular diabetes advocacy orgs you're involved with?
I have been involved with my local JDRF chapter for a long time but hold no formal advocacy title with their organization.
Can you tell us more about the health advocacy work you do beyond diabetes?
I was selected last year to be part of Joint Decisions, which is an educational initiative by Janssen Biotech. They have a core group of bloggers who come together to host online events to support those living with RA. From there, I was selected to attend the HealtheVoices conference this past Spring, which is where I met tons of health advocates representing a variety of diseases, from all over the country. I made wonderful connections, such as WEGO Health. When I was a child/teenager with diabetes, I often hid my disease, didn't speak about it much. When I was diagnosed with RA, I felt so alone and scared. I advocate now because I don't want anyone feeling alone. I want patients to know that there are people online, at all hours of the night, to talk with you. Sometimes just hearing "I totally know what you mean" is all you need.
I also blog/advocate for myself. I have received tremendous support and knowledge from my online communities. I truly learn something every day from them.
OK, quick – tell us about a time you’ve "gone MacGyver" and created a hack related to your health?
I recently had knee surgery and fashioned my own crutch bag out of a lunch bag. Previously, in order to delay surgery to a more convenient time, I had physical therapy teach me how to tape my knee cap into proper place (gross, I know!). If I can learn it myself without having to ask others for help, I'm in! I make my own Halloween costumes (see minion costume) and even sewed my own clothes as a kid.
What are your thoughts on the current state of diabetes technology and innovation?
I think right now is an exciting time in regards to diabetes technology. Being a diabetic for 28 years, I've gone from finger sticks and injections of R and NPH (clear and cloudy!) to an insulin pump with a continuous glucose monitor that wakes me up if I'm low in my sleep. I never would have imagined that an Artificial Pancreas would be a real possibility now.
Why did you enter our Patient Voices Contest?
I have learned so much from the diabetes online community. For example, I struggled with exercise and my blood sugars for years until a fellow type 1 I met on Twitter, who is an avid runner, told me how he manages his disease and activity. Taking his tips (such as ignoring the post-exercise high) along with my endo's advice and my own trial and error, I've made exercise a much more manageable part of my life. I would love to share what I know and what's worked for me with others and see how as a community we can work together to reach even more patients.
What are you most excited about for the Fall event?
I think the DiabetesMine Innovation Summit offers a unique gathering of people from a variety of backgrounds -- patients, clinicians, product developers, etc.. The majority of my interaction is with fellow patients/advocates so to be in a room with such a variety of stakeholders is very exciting to me. I am very excited to learn about the process around an innovation (from capital, to regulation, etc.). The more knowledge I have, the better an advocate I am for my fellow patients.
Thanks for taking the time to talk, Molly. Can't wait to see you at our Innovation Summit at the end of October!