Elna Narula is first and foremost, a mom of a type 1 daughter, and second, an RN, CDE. Ever since her daughter Svati was diagnosed thirteen years ago, she has worked as an advocate for diabetes research, lobbying on Capitol Hill and in the national media with her daughter, organizing Research Summits, and setting up a nonprofit to fund researchers to give them a voice and get funded. Elna is passionate about disseminating information on advances in type 1 research and technology, and spreading awareness about resources available to those who are newly diagnosed. Currently she works as an independent contractor providing diabetes education, developing programs, and consulting for diabetes biotech and research companies.
What got you interested in supporting people with diabetes?
I was an RN working in the field of gestational diabetes when my daughter was diagnosed at age 9. Suddenly I really “got it” about just how different type 1 is from GDM and type 2 by living with it 24/7 in our family. I took off a month of work to find out what was being done around the world to cure this disease and met a lot of wonderful people in the process. I ran a support group for families in the area, because it was apparent that this was such a help—everyone having support and sharing the best resources out there, to get through this. Families and kids (…and actually anyone diagnosed with any form of diabetes) need one another, particularly when first diagnosed. Sharing knowledge about one’s own experience, education, the latest in technology and research, benefits everyone.
What skills or qualities lead do you feel lead to patient success?
As I just mentioned, having a good support network is huge. Feeling that you are heard by members of your healthcare team, is also very important. It doesn’t matter whether you are a child or an adult—what does matter is that you have as much control as you can over this disease. That means feeling empowered and armed with good info about what’s out there to help you cope, and being valued and understood, surrounded by people who “get you” – hence, the tremendous value of the greater diabetes community—through online websites and support groups, diabetes camps, Children with Diabetes conferences, JDRF and ADA walks, the blogs, the books—making good use of the resources available—that’s key.
Receiving good diabetes education from the onset is also very important. It is sad, but not everyone has access to quality diabetes care or education—or know where to find it. As a CDE, I strive to meet people where they are mentally, emotionally, physically—and to teach and help them meet their immediate goals.
I have found that those living with diabetes who keep physically active do better all around. Those who excel in spite of their diabetes, whether as a diabetes advocate of some kind, or doing something else in another field—whatever it is, if you live your passion, you will be successful no matter what you do.
Having a proactive, can-do attitude works wonders.
As a parent of a daughter with diabetes, how do you want technology to help you connect with and support her?
My daughter is an adult now so she no longer needs to report blood sugars to me, and update me on everything diabetes-wise. If you prepare your kids well, they will, hopefully, do well when they are older and managing on their own—that’s the goal, right? However, that’s not to say that I don’t still think of things that can happen or worry, or that my cell phone is not with me all the time, because that’s just how it was these past thirteen years living with this thing—being there in case of a call about a hypo or something. Once a mom of a type 1, always one…
It was the cell phone that made all the difference for us—so I am grateful that we had that when she was diagnosed. (It wasn’t always the case with those who came before us…) It was the connection to the school nurse, to her when she was at a slumber party or away at a track meet.
We are entering an era when mobile health is fast accelerating and already there are other ways to share data beyond a phone call or text message. Having the ability for BG data to automatically be sent to other mobile devices is wonderful, and it is only going to get easier and better. Parents want to be able to see what their child’s blood sugar is, to be able to see what is happening in real time with their CGM, to know how much insulin one bolused from a pump or gave via a pen.
There are a number of apps out there and devices in development that will make a real difference. How nice it will be to have an insulin pen that sends dosing info to a smartphone and has other features like a pump or a bi-hormonal device that mimics what your pancreas can do—that makes decisions for you so you don’t have to think about how much to bolus and correct as you go through your day. (My daughter participated twice in Ed Damiano’s trial and we have seen firsthand how well it works and how rapidly this technology is progressing. It will have cloud-based support and remote monitoring capability as well, so that will be great for a parent, significant other, or healthcare provider to be able to see what is going on, too.)
What kinds of mobile technology could help educators better support patients?
Having diabetes devices such as pumps, meters, and glucometers that automatically transmit data to a mobile device will make it so much easier. Not having to use cables or have patients come into a clinic or office to download the data is ideal.
The Dario is one such example of a smartphone-compatible meter but what is also neat about it is that it is sort of like a Swiss army knife. It is an integrated all-in-one device where you can simply pull out the lancing device or the strip needed to test, rather than having separate components. Put it all together and you have one smart meter!
What I hear most from those living with diabetes is that they want simpler and smarter solutions. Endos and CDEs want the same—open, agnostic systems that work for all devices, not just one for one company and its particular products. I think we will get there—just don’t know when. There is a lot of exciting development going on in this field today.
Until there is a true cure, it’s all about making life with diabetes less time-consuming, less complicated, and less of a daily hassle.