We have just a few more interviews to share you all featuring our fellow PWDs who were chosen as winners of our 2013 DiabetesMine Patient Voices Scholarship Contest — as we’re now just one month away from our upcoming Innovation Summit.
Today, we’re exited to introduce Shelley Spector, who’s not only an adult diagnosed with LADA herself about 10 years ago, but also has a young daughter who was diagnosed with type 1 a few years ago. Shelley is a social worker in Houston, TX, who often sees the more scary sides of diabetes complications, and she shares some truth about how much PWDs who aren’t connected online actually know (or don’t) about the latest medical advances.
Shelley and her daughter both wear Animas pumps, and Dexcom G4 CGMs. Chatting with her recently, I could hear how passionate her drive is as a parent to let the broader healthcare world know what we patients really need with regards to new D-Tools.
DM) You were diagnosed before your daughter… tell us about that, first.
SS) I was diagnosed more than 10 years ago in my early 30s. I had several episodes of hypoglycemia but thought nothing of it. I was hungry all the time and I was very thin but just thought I was so lucky to have such an amazing metabolism! I was also thirsty and going to the bathroom often but dismissed all of it. I had very little knowledge about diabetes and knew even less about type 1 diabetes. I completed an insurance physical for my job and my fasting blood sugar came back really high. They sent me to an endocrinologist immediately and she diagnosed me with type 1 diabetes.
And what was your daughter’s diagnosis like, especially following your own?
When my daughter Lindsey was 5, she started complaining of feeling very weak late in the afternoons and was begging for snacks at school. I had also noticed that she ate large amounts of food! She had a UTI (urinary tract infection) on her 5th birthday and we took her to the ER since it was on a weekend. They told us to follow up with her pediatrician in 10 days and when we did they found glucose in her urine. They did a fingerstick in the doctor’s office and her blood sugar was 50. They did not seem too concerned and ordered an A1C and another blood sugar. When we got the results her blood sugar was 96 and her A1C was 5.7. They told me she was absolutely fine and that she did not have diabetes. The 5.7 seemed a little on the high side of normal to me but I so desperately wanted to believe that she did not have type 1 that I decided to trust the doctors.
During that year she was very thirsty, eating lots, and urinating frequently. On July 4, 2010, I could not be in denial any longer. I took her fasting blood sugar and it was 169 (funny how I remember all these numbers). I felt the blood drain from my body. It’s funny how denial works… I Googled everything I could find to try to convince myself that 169 was somehow a mistake or a “normal” fasting number. I took her to the pediatrician the next day and he confirmed that she had type 1. We went to the hospital and began insulin. I can honestly say those were the worst days of my life. The grief I felt was overwhelming and I was also four months postpartum with my other daughter. It was very hard to put on a strong happy face for my daughter when I felt such guilt, anger, fear, and sadness. I call those the “dark days.” But you have to grieve quickly, and then get yourself together so you can help your child.
Since you are a social worker in medical settings, what have you seen as far as knowledge about D-tech?
I work with liver transplant patients but I often encounter patients who have diabetes. I can honestly say I have never met a patient who had heard of a continuous glucose monitor prior to me showing them mine. There are multiple re-admissions to the hospital due to poorly controlled diabetes. Imagine if all patients had access to a CGM and could monitor their blood sugars 24/7? Prevent severe hypoglycemia or DKA? Hospitals would save lots of money!
What inspired you to enter our Patient Voices Contest?
I was very passive about type 1 when I was diagnosed because I was an adult and chose to handle it quietly. I managed it well, and went through two successful pregnancies. But when my daughter was diagnosed I could not sit by and do nothing. I had to get involved and do everything possible to make sure she has a great quality of life. We want to take full advantage of the amazing technology available to us to better our lives. I want every diabetic to have a great quality of life! I can’t be quiet any longer.
Describe the basic message you aimed to convey in your video entry?
My daughter is 9 now and wants to “hide” her diabetes. It is very hard to hide a CGM and insulin pump but we have come up with some ways to be more discreet about her disease both in the classroom and in public. I imagine many tweens, teens, and young adults are private about the disease and just want to fit in. Many may choose not to take advantage of the great technology because it is visible all over the body. As as result they may have poor control and are more likely to experience problems and/or complications. How can we make technology more “cool” and discreet for this population? My other message is how can we make sure ALL diabetics, health care providers and hospitals have access to the latest technology available?
What have other parents said about the benefits of the latest D-tech, especially for activities like sleepovers?
Many of the parents I talk to are very happy with the pump and CGM. Children have frequent birthday celebrations at school and it is so nice to be able to bolus on a pump for an unexpected cupcake rather than go to the nurses office to get an unexpected shot. It is also so nice to sleep late and set a temporary basal to avoid a low instead of waking up early and being forced to eat. Their children now have many successful sleepovers with friends because the parents feel much more confident seeing the numbers and trends on the CGM. It lessens the fear for everyone.
You talked about kid-friendly apps — what do you see out there, and what would you hope for?
My daughter likes (Medtronic’s) Lenny the Lion app because she likes the positive reinforcement when she guesses carb counts correctly. Children thrive on positive reinforcement. There has to be a benefit for a child to do something more than once. For example, if you are going to make your child wear a CGM and still prick their finger 15 times a day, in their mind there is really no benefit for them to wear it and you may get a lot of push back. But reducing finger sticks is a great incentive to wear the CGM for a child (and for an adult). Finding apps that teach children how to manage their diabetes but also provide a game where they can “win” is something I hope to see in the future.
Quick: what’s your 140-character Twitter sentiment on diabetes tools & technology?
Diabetes technology should provide an incentive for good control, improve quality of life, and lessen the burden for PWD, caregivers, health care providers, and hospitals.
What would you most like to experience at the DiabetesMine Innovation Summit, and what do you hope to bring to the Summit yourself?
I am looking forward to hearing about the latest technology but also want to help find ways to educate the public, hospitals and providers about the benefits of using technology to manage diabetes. I hope to bring the perspective of an adult living with type 1 and a parent caring for a child with type 1. Both require different management tools from a psychosocial perspective. How can we encourage tweens, teens, and young adults to wear all this equipment while allowing them to “fit in” with their peers?
How can advocacy around innovations potentially affect your life and the lives of other PWDs?
In an ideal world I hope to see every person with diabetes from every socioeconomic background have access to the technology that my daughter and I are so fortunate to have. Every time I meet a newly diagnosed type 1, I make sure they are aware of pumps and CGMs. I encourage them to ask for the technology from their provider and to find another provider if they do not support technology. I hope to give parents and other PWDs the courage to advocate for themselves and their children. Providing them with information on what is available to better their lives and the lives of their children is now a passion of mine.
Any grassroots advocacy efforts of your own that you’d like to share?
Yes! Dr. Jake Kushner (head of pediatric diabetes and endocrinology at Texas Children’s Hospital) and I have formed the first-ever girl scout troop for girls with type 1 diabetes in Houston. We are trying to spread the word for those who may want to be involved. Anyone who has a child with type 1 or knows someone in our area who may be interested in joining this troop (K-12th grade), they can email me at email@example.com. Siblings and cousins are welcome to join too. If someone’s daughter is already in a troop, she can still join this one as well and be part of both troops. We are also looking for leaders and assistant leaders. We plan to start a boy scout troop in the near future and hope to expand this nationwide eventually.
Nice! Managing diabetes for yourself is tough enough, but doing double-duty as a D-Mom/Advocate is truly impressive. We can’t wait to hear more of your ideas about engaging young PWDs, Shelley.