Tag: Access to Support

Starting A College Diabetes Network Chapter – by Nicole Reed

Nicole Reed shares her story of how and why she founded the New York University Chapter of the College Diabetes Network. To hear more, head to our Facebook Page to check out the recent Minisode she did with us!

I founded the New York University (NYU) Chapter of the College Diabetes Network in the fall of 2016. My goal was to provide those living with type one diabetes a community of support and to raise awareness. The NYU Chapter, which is the first chapter of the College Diabetes Network in New York City, meets on a monthly basis for discussions related to the experience of living with diabetes in college. Past meetings have included discussions about diabetes with regard to academic performance, relationships, mental stress, and travelling. In the spirit of serving others, the NYU Chapter also volunteered at the JDRF Type One Nation event in the Spring of 2017 to answer any questions people had about life with diabetes on campus. 

Created in 2010 by Christina Roth, a student at the University of Massachusetts-Amherst, the College Diabetes Network is a non-profit organization, which provides innovative peer-based programs on college campuses (and beyond) and empowers young adults to succeed in life with diabetes. The College Diabetes Network nurtures a community of support through online resources, such as its website and social media pages, in addition to parents, fellow students, medical authorities, and campus administrators. 

The most common question that I am asked when I tell people I have diabetes is: “how did you find out that you have this condition?” Symptoms like unquenchable thirst, utter exhaustion, and frequent urination persisted for a few months until my blood sugar reached a dangerously high level, which made me feel very sick. Shortly after my diagnosis in the emergency room at a local hospital, my family and I began attending events hosted by my local JDRF chapter. Having experienced the unconditional support and care from people in the exact situation as myself, I wanted to give people living with type one diabetes opportunities to form bonds with one another. 

On Tuesday, September 26th, I will celebrate my 10th anniversary living with type one diabetes! 

Pep Me Up – by Stephanie Haack

Stephanie Haack is from Berlin, Germany and lives with type 1 diabetes. Today she shares her story on how the Internet changed her life in several ways and how she is giving back to the diabetes community through Pep Me Up!

The Internet is a magical place. You can find all kinds of information, inspiration and connections – endless possibilities are only a few clicks away. It can literally change your life.  

The Internet changed my life eight years ago. I had been feeling tired and unwell for a few months, battling infection after infection, when I started noticing that I was unusually thirsty. One day, after gulping down two huge bottles of water and still running back to the kitchen, I realised that this couldn’t possibly be normal. So I turned to the Internet. It didn’t take much more than googling thirst and reading the first few results until I called my boyfriend and told him: “Google says I have diabetes. But that can’t be it, right?”. We both laughed it off, but the next day, the doctor made it official. All I needed to say was thirst and tiredness. All they needed to do was a simple finger prick. They immediately sent me off to see a specialist, who immediately sent me to a hospital to get settled in for a week and learn everything I needed to know about the condition that I would now live with for the rest of my life. 

During the years that followed, I had a hard time accepting that diabetes would be a big part of my life now. I couldn’t admit to myself or my friends and family, that diabetes is actually a big deal. I didn’t know anyone else who had type 1 and I didn’t feel that my healthcare team understood what I was going through. I wanted to be perceived as strong and independent rather than sick and weak. So I told myself and anyone who would listen that this condition didn’t take a toll on me. 

But let’s be honest: Even despite all the advancements in technology and modern diabetes management, diabetes will always demand a lot of time and energy from the person living with it. 

And then, after years of feeling isolated with this diagnosis, the Internet changed my life again. After an appointment with my endocrinologist we were trying to figure out the date for our next meeting. When I checked my calendar on my phone, he said something like “You’re a young, modern woman. You should get in touch with these crazy people I met at a conference recently. They play blood sugar bingo on the internet!”. I had no idea what blood sugar bingo was, but he handed me a flyer and that is how I found my way to the diabetes online community. I still can’t believe that after diagnosing myself via Google, I had never thought of googling “Diabetes” again – and that I needed an old school flyer to finally find out that there was a whole other world out there! 

I couldn’t believe how many people with diabetes were active on social media, exchanging thoughts and experiences, helping each other out in difficult situations or just lending an ear. So many different blogs, online forums and Facebook groups – I knew immediately that I wanted to be part of this and contribute to this incredible community! That is why, two years ago, I started my blog PEP ME UP. 

 Ever since then, the diabetes online community has been a huge part of my life. I’ve met so many inspiring people and made really great friends. Knowing that I’m not alone, that I’m part of something bigger, gives me a daily boost of  motivation. That is why I devote a lot of time and energy to the diabetes online community – by writing about my experiences on my blog, creating fun or helpful products for my little shop, advocating for patients and representing them at industry meetings or simply by sharing, caring and listening. 

This community has helped me so much and still helps me every day. That’s why I will do whatever I can to support and strengthen it, so that it can help many, many others. Because, as it turns out, the Internet can change your life – it certainly has changed mine.

Follow Stephanie and her adventures on Facebook, Twitter and Instagram! 

Behind The Scenes: Talking About The College Diabetes Network

The beauty of live broadcasting is that you never know what will happen. Sometimes the outtakes are just as good as the final product (and usually more entertaining!). Here we take you behind the scenes in preparation for our NYU Chapter of College Diabetes Network Minisode with Katie and Nicole. 

Moving away from home to college or university is a huge transition for young adults. It can be even more daunting for those living with diabetes. How have you handled major transitions like these?

AADE 17

A couple of weeks have flown by since the American Association of Diabetes Educators (AADE) Annual Meeting. I’ve been taking this time to reflect on the busy few days that was AADE17, which was filled with many new learnings and plenty of networking. Here are my main summary points from the conference. Don’t forget to check out our Facebook page for my daily takeaways from each day at the conference.

1. Affordability and Accessibility
#Access4all has been a huge movement over the past few years with the rising cost of insulin. But I realised that we can and should actually break this down to accessibility and affordability. Access is the first barrier predominantly faced by developing countries. Without access, it doesn’t matter how much money you have, getting insulin is difficult. The other problem that we see, especially in countries like the United States, is insulin affordability, which draws a real divide between the wealthy and the poor. However, access is there, whether it be through emergency departments, free clinics or cheaper varieties of insulin. 

Both are difficult challenges to tackle and I believe that part of the solution is to work closely with industry, government, healthcare professionals and people with diabetes to drive change, which brings us nicely to our next point.

2. Collaborative approach to change
Part of our mission at Beta Change to bring industry, healthcare professionals, researchers, policy makers and people with diabetes together to create change within and across diabetes communities. For the past year, we have been trying to find the right channels to reach out to other stakeholders. From many of the sessions, it sounds like they’re willing to collaborate too. So we’re doubling our efforts to make this happen. It is crucial that the voices of people who are passionate to create change in the global diabetes community are heard. In time, we hope that your voice and your passion can lead to a partnership with Beta Change. If you’re interested, feel free to drop us a line, we’d love to chat!

3. The importance of mentorship 
One of the special moments of flying across the world for AADE to share my research was the opportunity to meet many of my international diabetes friends who also attended the conference. Throughout the conference, I was lucky to be provided with very wise words, guidance and encouragement personally and professionally. And I thought “imagine what budding diabetes advocates could do with such inspiring advice and networks”, which reinforces our goal at Beta Change to develop a mentorship program so that potential leaders can have the same support and resources to achieve their advocacy efforts. 

So there you have it! Those are my takeaways from AADE17. Check out the #AADE17 on Twitter for more conversations.

Disclosure: My attendance at AADE17 was partially funded by a grant from Deakin University, Australia, as part of my PhD program and for a poster presentation on my research. The grant covered my flights and some accommodation costs. 

Psychology and Diabetes

Living with diabetes isn’t all about our HbA1c. Mental health and emotional well-being is a key component to living well with diabetes. Katie speaks to researcher Dr. Lisa Hynes on her research in health psychology that focuses on young adults with type 1 diabetes. What do you think of the role of mental health and psychology in diabetes management?