Moderated by Allison Blass
Many diabetes advocates are busy highlighting the impact of diabetes even more than usual this month. On November 14, diabetes advocates around the world will come together to honor World Diabetes Day, which was officially recognized last year by the United Nations. Diabetes advocacy is critical in helping people understand the daily experience of managing diabetes as well as why research funding is so important. The bloggers in our round table share some of their thoughts on why diabetes advocacy is important, what activities they have been involved with, and how it has impacted their lives.
Why do you think diabetes awareness is important and what are you doing to help bring attention to our cause?
Gina: Not many people outside of [the diabetes community] fully understand type 1 diabetes. We need to teach people what we go through on a daily basis–that it can be mentally exhausting, and that diabetes isn’t just eating right and popping a pill. They need to know diabetes is a chronic condition, there is no cure right now, and it doesn’t go away until there is one. You don’t get it from eating too much candy and you can’t catch it from someone else. Type 1 and type 2 are very different. We need a cure, we need support, we need people to understand us. We need more awareness. Pass it on.
Manny: The Diabetes Hands Foundation works with almost all nonprofit groups and other online communities in the U.S. and the IDF internationally to help raise awareness about diabetes. These are some examples: DiabetesDoodle.com, a collaboration with DiabetesDaily.com and with the support of JDRF and several other groups; setting up a World Diabetes Day group in TuDiabetes.com and keeping members informed about things being done around the world to raise awareness around WDD, and keeping them motivated to do more about this; running diabetes awareness initiatives like Word In Your Hand, Drawing Diabetes (http://tudiabetes.com/group/drawingdiabetes), and Diabetes Supplies Art (http://tudiabetes.com/group/diabetessuppliesart).
Scott J: Diabetes awareness is important to me because in my opinion there is a large imbalance in the difficulty of living life with diabetes and the amount of research funding it draws. When it comes down to it, the treatment options we have available are still very primitive–squirt some medicine just under your skin, and jab yourself with a needle to draw blood that can be checked for sugar. Really? Sure, the methods we have to do those things get better all the time, but it still seems very primitive to me when thinking about all of the scientific advances that we have seen elsewhere.
I struggle personally with my actions to bring attention to our cause (outside of blogging) because I feel betrayed in many ways by the lack of progress. I used to think it was some big conspiracy theory designed around the finances of diabetes, but as I have grown older and learned more I think it is just a very complicated thing to figure out. Right now I feel my time and other resources are very limited and I just don’t know how and where to apply myself to get the most “bang for the buck.” This is in a big part a result of my skeptical attitude and a feeling of being “burned” in the past.
Sandra: Diabetes awareness is important because it translates into a greater understanding of (and by extension, compassion for) those living with the disease; an increased willingness by schools, companies, and other organizations to make accommodations when and where needed; and a larger number of people providing more vigorous support toward finding a cure. I try to bring attention to our cause by supporting newly diagnosed families online, via phone and in person, and by discussing (and debunking myths surrounding) the disease with anyone willing to listen. I’m also a diabetes school advocate–acting as a resource for parents as they seek 504 protection for their children with diabetes, educating parents and school officials as much as possible throughout the process.
What JDRF events do you participate in and why do you like them?
Gina: I like going to the JDRF Spring for a Cure event at the Puck Building in NYC. There are over 600 young adults that attend. You can interact with so many people and make so many contacts. It’s really an unbelievable event. There are silent auctions in one room and a huge club-like setting in the other with all these food vendors surrounding the outer edge of the room. You get a taste of all different cuisine and also wine and different vodkas. It is the best diabetes event I have ever been to.
Scott J: I love the JDRF “Walk for a Cure” and attend every year. It is held here at the famous “Mall of America”. There is so much raw energy, and there is something so special about the energy of children. They are not “tainted” by the experiences of life that can sometimes crush the hope. They, WE, are surrounded by so many people who love us all because we are fighting the same challenges each and every day. Living with diabetes is often so isolating that it is incredibly uplifting to join so many people all excited and pumped up to be making a difference. I get chills down my spine each and every year. I remember the JDRF walk from 2006. We were waiting for the walk to start and we were near this table full of teenage kids and a few adults. They were passing the time by doing some kind of camp song or battle cry or something. “Bang Bang Clap,” “Bang Bang Clap,” “Bang Bang Clap” on the table and a song or something to go along with it. Man, it was awesome. They were so pumped up and ready to go! I’ll never forget that.
Scott S: Over the past 32 years, I have done plenty of JDRF Walks to Cure Diabetes and a fair number of other events. These are great events because everyone there is impacted in some way, and they all have a common goal to cure diabetes for themselves, a loved one or for someone they work with. It’s always great to meet others with type 1 diabetes because there’s an instant common bond which requires no explanation. Above all, these events also help the cause.
Kerri: I have captained two JDRF walk teams for the past few years, one for the Fairfield County, CT chapter and another for my hometown in Rhode Island. As a kid with diabetes who has “grown up” (oh, that’s so in quotation marks) and become an adult with diabetes, I’m proud to show the younger kids and parents of kids with diabetes that you can grow up strong, happy, and confident while living with this disease, and I find so much inspiration in their own young lives. JDRF walks give me the opportunity to share a little bit of the diabetes community with my friends, my family, and my coworkers. Having all of their support means the world to me.
How has being a diabetes advocate affected you?
Gina: Honestly, being an advocate was the best thing I have ever done. It has given me so many opportunities to meet so many great people. It has given me a chance to make real differences in people’s lives. When someone thanks me for helping them, I get so emotional and sometimes I cry because I am so happy and I just can’t believe that I actually helped someone. There are other times that I can feel overwhelmed and exhausted and just need a break. When that happens I know that IT IS time to take a break. So I do it to keep my mental state of mind healthy.
Amy: I always tell people, if I just had this stupid disease, and I didn’t have my blog and the community and all the events and advocacy efforts that go with it, THAT would be a bummer. Being part of this passionate patient community is what gets me up in the morning.
Manny: It has made me much more aware of the importance of raising awareness about this cause. I feel there is a big need to UNITE around the issues that we all care about as a way to ensure that diabetes gets more attention (and funding) and be able to put aside the differences there may be between organizations when it comes down to matters that will ultimately benefit the diabetes community at large.
Bernard: It’s helped me understand how important it is to keep legislators up to date with progress in diabetes research. There are too many issues for them to track each of them, so unless I maintain close contact, they can’t be aware of legislation that affects those of us with diabetes. Being an advocate has also helped me appreciate how much better off we are in the U.S. than in many overseas countries: We have access to the latest meters, pumps and CGM devices and can attend many conferences related to diabetes.
Scott S: Being an advocate has been tremendously empowering and enabled me to feel directly responsible for progress. When legislation passes to extend the Special Type 1 Diabetes Funding program in Congress, I feel like I had a direct impact on making that happen. For that reason alone, I think it’s worth being a part of. I’d like to see more of this happening at the local level (e.g., state-level), and some chapters do a better job than others, but as Larry Soler (Vice President of Government Relations for JDRF) told me in an online chat I hosted a few years ago, the organization still has some way to go to be more effective on a local level. Volunteers for various committees play a vital role in that!
Can you share a time that you helped educate someone about diabetes?
Amy: I’ve spoken with and corresponded with many, many people with diabetes, passing out practical tips wherever and whenever possible. But I think the most moving instances have been where I posted other people’s stories–dramatic stories about severe lows they’ve experienced, or their struggles to get adequate health coverage–and so many other patients picked up on those personal stories and responded in kind. I think bringing people together who feel alone and isolated is very, very impactful. Learning from other patients has certainly helped me more than anything else.
Scott J: I remember helping my grandmother, recently diagnosed with type 2, understand that fruits and starchy veggies would raise her blood sugar. The concept of it being carbs that raise blood sugar, versus the stereotypical “sweets” alone, is a hard one for many to understand. Diabetes also comes up a lot when I play basketball at the YMCA. People see me checking my blood sugar, or they might see my pump infusion site or CGM sensor and transmitter and ask questions. They will ask because they usually will have had a family member recently diagnosed or know of extended family history of diabetes. It is a great opportunity to help them better understand the difference between type 1 and type 2.
Sandra: Gosh, it seems like I’m always doing that! Most recently, I was speaking with a parent at my son’s school who’d just learned that Joseph had diabetes. “What do you do about his Halloween candy?” this mom asked me. “Do you just donate it? He certainly can’t eat it.” In response, I calmly told her: “No, no, Joseph can indeed eat candy.” We then went on to discuss the differences between type 1 and type 2 diabetes, and why candy was not off limits. While hearing someone give voice to common misconceptions about this disease can be dang frustrating, I’ve found that those same comments often serve as a springboard into thoughtful discourse about diabetes–and thus, an opportunity to increase awareness.
Kerri: My job is to educate others about diabetes through my work at dLife. I also blog daily about diabetes at SUM, which helps show what “real life” with diabetes is like, with the literal and figurative ups and downs. Whether it’s explaining the difference between type 1 and type 2 diabetes to coworkers, showing my insulin pump to an interested family member, or even confiding my deepest diabetes fears to my wonderful husband, diabetes education happens daily. Being honest, and being patient, makes every moment with diabetes an opportunity to educate.
One of the goals of diabetes awareness is to help fund research for a cure, so what kind of research are you most intrigued by?
Amy: All of the research intrigues me, especially islet and stem cell research that may well be leading us toward a cure. But I have to be honest: I do not expect to see that cure in my lifetime. That’s just what I believe. For that reason, I’m also very interested in research that substantiates how new devices and medications can help us live well with diabetes RIGHT NOW, and avoid complications. That would include continuous glucose monitoring and smaller, more powerful insulin pumps, of course.
Scott J: While I think there is certainly a lot of merit to the studies focused on the islet cell transplants or restoring islet cell function, I also get excited to see work focused on the autoimmune aspect of things.
Sandra: Research targeting the underlying autoimmune response that is the cause of type 1 diabetes is most intriguing to me. Simply put, it makes the most sense. As a result, I’ve been closely following and supporting the work of Denise Faustman.
Bernard: I’m very interested in Dr. Denise Faustman’s research and the progress that she seems to be making toward a possible cure. I recently attended a diabetes conference and I was fascinated by the progress reported in tissue engineering working toward making it easier to transplant pancreatic cells. I hadn’t realized how fragile pancreatic cells are, and how much nutrition they need to function. Making pancreatic transplants work would be a great way to reduce complications due to the challenges of treating diabetes.
Scott S: The area that I find most intriguing is the one that generally receives the least attention: treatments for the immune system, which is the very cause of type 1 diabetes. The reason is because this remains one of the least well-understood areas of science, and in my opinion, is really the key to any cure. There are a number of intriguing treatments for the autoimmune response (you may find them addressed under the umbrella category of “inflammation”) in trials now (including the Eli Lilly & Co./Macrogenics partnership facilitated by JDRF last year, lisofylline [LSF], DiaPep277 being tested by generic drug-maker Teva along with partner Clal Biotechnology Industries Ltd., and even the the BCG trials now being undertaken at Massachusetts General Hospital). My hope is that one or more of these treatments proves successful and will help not only type 1 diabetes, but other autoimmune diseases as well.
If someone wanted to get started raising awareness about diabetes during the month of November, what do you suggest they do?
Manny: I would say to have them go to DiabetesDoodle.com and sign the petition. We are asking Google to please dress their home page in blue on November 14 for World Diabetes Day.
Bernard: Contact your local emergency services and talk with them about diabetes. Police personnel need to know how to recognize low blood sugars and treat them effectively. You can also go to local schools and tell children how to recognize the signs of diabetes and what it’s like to live with this disease. Finally, think about making an appointment with your local legislator and tell them about diabetes. Let them know that you’d be happy to offer advice if they have any questions about diabetes.
Scott S: Above all else, take your diabetes care out of the closet, and by that, I mean not hiding your testing, insulin dosages or need for a treatment for lows. By taking these things out of the view of others, it makes diabetes (and all that goes along with it) seem invisible rather than a disease which deserves to be cured. For too long, we have allowed diabetes be defined by others, and in the process, we have allowed the disease to be viewed as a nothing more than a minor inconvenience, and that needs to change if we want a cure to happen in our lifetimes.
Kerri: If you’re looking to get involved in raising awareness for diabetes, your options are fortunately vast and almost limitless. Contact your local JDRF or ADA chapter and get involved with a diabetes walk or charity event. Ask your medical team about local support groups, and if there isn’t one near you, start your own! And if you are living with diabetes, or love someone who is, think about starting your own diabetes blog, or joining different diabetes message boards and social networking communities. Connect with others, find hope and inspiration, and show the world that there is life after diagnosis.