Hi everyone – today we bring you another star feature blog interview – with Alexis Pollak from I Run On Insulin. Alexis was diagnosed with type 1 at 10 years old, and has been through many ups and downs with diabetes. She currently works at a pharmaceutical company that makes diabetes drugs, and is a passionate advocate that likes interacting with people, sharing her experience and reaching out to the community.
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When did you start your blog and why?
I started my blog in February 2009. At that time, I was a regular reader of other diabetes blogs and often found the best advice about living with this disease came from patients, not providers. The anecdotal information about managing diabetes was priceless, and I wanted to have an active voice in the diabetes online community. Once I started writing and connecting with other folks, I was hooked. Blogging has truly become a powerful resource of support for me, and integral to my diabetes management.
In your “About Me” section, you share how you had good control over your diabetes as a young kid, but things got harder in your teenage years, and you ended up at the hospital. What advice would you give to teenagers struggling to handle all the changes they are going through and the various challenges presented by type 1?
I think it’s tough for teenagers to see the big picture and realize they have to take care of themselves now so that they can be healthy for a long time. I’d remind them that having Type 1 diabetes is not your fault, and you don’t ever need to be ashamed of it. If you want to truly enjoy this lifetime; i.e. travel, go to college, have a successful career, find a happy relationship, then taking care of your diabetes will let you do those things. If you let diabetes control you, then you won’t be able to do all those things you want to do. It doesn’t mean you have to broadcast to the world that you have diabetes, but it does mean you should do whatever you need to do to take care of your health. Trust me, people will understand – even other teenagers.
As a diabetes advocate, how often do you bump against people’s misconceptions of the disease? What are the biggest challenges you face up to?
I face misconceptions all the time – I work, blog, and volunteer in the diabetes world, and I’m very public about having diabetes which means I hear A LOT of stereotypes. The one that frustrates me the most is the idea that this disease is as easy as taking injections and avoiding sugar. It’s not! Diabetes is a full time, 24/7 job that you didn’t ask for. It’s testing, calculating, carb counting, titrating and worrying all day long, for the rest of your life. People don’t understand how much work it is, and they think that if you just eat a certain way and take an injection that all is well. In fact, the mental energy spent on this disease is the biggest burden of it.
In your latest blog post, “Adding it all up”, you mention an interesting statistic about people who take good care of their condition living on average only three years less than people without diabetes. What do you believe is most needed to get a greater number of type 1 patients to live a very well-controlled lifestyle?
I live by a phrase that diabetes psychologist Dr. Bill Polonsky created: “Well-controlled diabetes is the leading cause of nothing.” Its tongue in cheek of course – we’re often told scary statistics about the complications of diabetes, but the truth is that accepting your diabetes and working to incorporate it into your lifestyle in a way that makes it manageable is what will truly set you free- not denying it. I wish that more people had access to great education and great examples of other people living well with diabetes. I think the single most important thing to living well with diabetes is the desire to live a long, healthy, normal life. That is the motivation needed to get through all the tough days and moments needed. When you think big picture, it’s easier to pick yourself up after a tough day.
The JDCA aims to be an independent analyst of the type I diabetes philanthropic landscape. We are seeking to form a paradigm-shifting coalition of donors who will work together to facilitate a cure for type 1 diabetes by 2025. Two of our major tenets are the importance of defining a cure and establishing a cure-by date.
What is your definition of a cure? What restrictions would need to be lifted off a person’s lifestyle for you to consider something to be a “cure”?
Although people tend to say that a cure can mean many things, I am pretty decided on what it means to me. In my mind, a true cure is me having the ability to produce my own insulin and regulate my own blood sugar automatically. Whether that’s biologically induced or artificially recreated, a cure to me means my body operates as if it had a functioning pancreas. That being said, I think there are levels of the diabetes burden that, if lifted off a person’s lifestyle would very much increase a person’s quality of life. A closed-loop CGM/pump system for instance, would lighten the load considerable. So would “smart insulin” that works harder when it needs to. An implanted CGM that would never need to be changed out would be cool too. I think anything that helps people live better, healthier, and longer with diabetes is a good thing. But a cure, to me, means I can regulate my own insulin and blood sugar automatically, worry free.
Based on your interactions with the diabetes community, when do you think this will be achieved?
That is such a tough question. I just don’t know. When I was diagnosed at age 10 in 1992, my endocrinologist told me there would be a cure for Type 1 within 10 years. All I know is I’m still waiting, and always hoping. And hopefully, the JDCA can help us get there by 2025! That would be a dream come true.
Alexis Pollak
www.irunoninsulin.com
