Today is World Diabetes Day! So we wanted to share this recap of last Friday’s Roundtable with awesome Health Activists in the Diabetes Online Community (DOC). How are you raising awareness this month? –Amanda
Roundtable Recap: Diabetes Awareness Month
In honor of Diabetes Awareness Month, WEGO Health decided to highlight (and learn) about the disease that may seem a little taboo to those who are not directly affected by Type 1 or Type 2 Diabetes. We love to bring awareness and information to others who may be able to use the info to help themselves or those in their community. In Friday’s roundtable we focused on Diabetes. We found several amazing men and women who are also trying to spread the word about Diabetes, Jen (@BlueHeelSociety), Tarra (@msfirecracker22), Mark-John (@markjohn1 ), Sara (@saraknic), Tony (@type1rider), and Gloria (@GloriaLoring). These six incredible people shared their stories and their helpful advice about managing the disease, advocating for yourself, and facts about Diabetes.
Mark-John – http://www.1diseaseworldvoice.org/
Tony – http://www.type1rider.org
Gloria – http://www.glorialoring.com/
We all start have start somewhere! How did you get involved in advocating for Diabetes?
Jen: I first got involved in 2005 when my 4 year old was diagnosed. Together we’ve done a lot for Diabetes like visiting congressmen. Then my older daughter was diagnosed recently, so now we’re getting her involved. When she was diagnosed going into college she could not feel lonelier. And although there is a great online community she wants real people to hang out with so I’m trying to put her in touch with people as best I can.
Mark: I was 54 years old when I was diagnosed with Type 1 ½ which I have never heard of. I was hypoglycemic; my wife found me in the office chair looking like a zombie and rushed me to the hospital. Then I got the diagnosis and looked for the answers on the internet and noticed there was a void. There were so many great people online but no one in the neighborhood. That’s what Diabetes needs, an outward program where people need to be proud of it and reach out. So we started organizations that built communities on the outside. I’m trying to make people come out of the woodwork and not be afraid to go outside and scream “I have Diabetes!”
Tony: I kind of fell into being a Health Activist. I was motivated by speakers at the Diabetes Exercise Sports Association conference to post about being the first diabetic to compete in a 24 hour solo mountain bike race. Then I started to get e mails from other athletes who have Type 1 all around the world. We promote awareness and encourage people with Type 1 and Type 2 to not feel discouraged by the disease at all.
Gloria: I became an activist in Diabetes community because my 4 ½ year old son got diagnosed in 1979. I am a singer and an actress and I started Days of Our Lives Celebrity Cookbook that raised over 1 million for Diabetes. I’ve written six books benefitting those with Diabetes.
Connecting to the online community is a great way to meet others that share your passion for Health Activism and let you know you are not alone on this journey. Social media has become a huge tool in connecting with others in your community.
How has social media and the Diabetes online community (DOC) changed your personal health journey?
Tarra: It has actually been very valuable. I recently ran into major issues with the Insulin pumps and someone read my blog and shared it and I had 30 or 40 comments in a couple of days telling me what to try. My doctor or the pump company didn’t know what was wrong and then I found out I had an allergy. I would not have found that out for quite a while if it wasn’t for the online community. You guys were more helpful than my doctor and the company. Everyone I’ve met has been so kind and so sweet.
Mark: I had a hard time because I didn’t know when I was going to drop. I would go on a job and just pass out. It’s a scary feeling. The DOC listened when I complained. Even if it wasn’t diabetes related, they all stood by me and said “you’ll get through it.” If it wasn’t for them coming through and giving support I would not have gotten though my tough times.
Sara: Before I found the Diabetes online community I would go to my endocrinologist and I didn’t make any changes on my own, I would wait for him to tell me what to do. Then I found the Diabetes community and it turned into my doctor asking me what I wanted to talk about. It changed it to something where my doctor is guiding my health to something that is personal and I am controlling my disease and treatment. I gained knowledge.
Tony: Last year I was at a race and I was put in a life or death situation. The encouragement from DOC got me to continue to ride after that. DOC keeps the spirit up of those with Diabetes every day. If someone is down there are 100 people that are willing to pick them up. It is in my experience that Diabetes is not a black and white disease. We all know you can eat the same exact food everyday and have different blood sugar ranges. And that’s one of the hardest things to grasp because patients often look for the answer and there is no answer it’s just kind of dealing with Diabetes on a daily basis, and that’s okay.
Gloria: As parents you’ve got to have someone who is a few years older than you that have a child approximately your child’s age that can help you through it. I give kudos to all of your who have found connections and provide connections to others through blogs and social media. There is so much value talking with people that have a lot of knowledge, it is just essential.
In honor of Diabetes Awareness Month there have been a lot of new and exciting programs being created. What are some of the programs you’re most excited about?
Jen: For World Diabetes Day we are trying to get monuments to light up blue! Niagara Falls will be blue and we are trying to get the Empire State Building to light up blue. The Blue Heels Society is starting an initiative to wear blue shoes (any shoes, not just heels, men!) and to talk about Diabetes while wearing their blue shoes.
Sara: I know you mentioned the Big Blue Test and that is a big thing to focus on because we only have a week left and are just a little over halfway to the goal. The Big Blue Test is that you exercise 14 minutes a day, and if you do it you donate $5 to an organization. It’s a Diabetes awareness initiative that people with or without Diabetes can participate in. One organization is in Haiti where I’ve been and I asked a hospital if they treat people with Type 1 Diabetes and they said they don’t treat Type 1 because they aren’t living long enough. So if exercising 14 minutes a week can save a life then people should do it.
When it comes to Diabetes, I think most can agree that there can be a thing or two done to raise awareness. How can other Health Activists raise awareness and education about Diabetes?
Tony: Well I think the main problem is there are too many groups working in too many different directions. We are very lucky we have a lot of different groups but I would love to see those groups come together. And we don’t really have a face, we would love one face for people to see and recognize, someone to work over a long period of time so when people see them they automatically think of Diabetes. We don’t have one solitary voice.
Mark: One of the things we try and push through the organization is, socially we are all diabetic but medically we are all different. I don’t care if you’re Type1 or Type 30—we’re all in this together. I promote “Type D”’. If you look at Livestrong the one thing I can say about that community is that it doesn’t matter what type of cancer you have, you all have cancer. All they care about is “how can we make your life better?” They care, the whole community cares.
Sara: I think you are dancing around the issue I keep dismissing. I believe we are one of the only diseases that fight amongst itself. What is missing from Diabetes awareness is Diabetes awareness.