Today, as we continue our interviews with the 2019 DiabetesMine Patient Voices Contest winners, we’re excited to feature longtime type 1 Amber Clour in Oklahoma City, OK, who’s known in the online community as one of the founding voices of the Diabetes Daily Grind blog and podcast.
Amber has been a friend and fellow D-advocate through the years, and we’re thrilled that she will be one of the empowered patients attending our annual DiabetesMine Innovation Summit in San Francisco coming up in early November.
DM) Hi Amber! Let’s start with your diagnosis story, please?
AC) I was diagnosed with type 1 diabetes two weeks after my eighth birthday in January 1984. I had lost nine pounds, kept falling asleep on the bus ride home from school, and had an insatiable appetite and thirst. With no family history of T1D, this disease was not on my parents’ radar, but they knew something was wrong as I had gone from being an obedient, sweet child to a total nightmare.
My 600+ blood sugar confirmed my doctor’s worst fear; I had T1 diabetes. Dr. Abbott cried as she explained what this meant. My only response was, ’You mean no more Snickers?’ My mom was given two choices: rush me to Children’s Hospital or Dr. Abbott was going to call an ambulance. There was no time to waste.
Wow, was it that urgent? What happened next?
The hospital staff were waiting for me to arrive—a whirlwind of doctors, needles, and nurses. I was so dehydrated you could see the bones in my hand. My eye sockets were a dark shade of gray, and my skin was pasty. I spent two weeks in Children’s Hospital where I learned to give shots on an orange, determine portion sizes, test my blood sugar, and all things doom and gloom.
I actually made a YouTube video about my diagnosis in January 1984 and found it difficult to coach the young woman who played me because I had never shared this experience with anyone. A huge burden had been lifted and I felt my story, and how the video ended, might inspire others to live life to the fullest despite our diagnosis.
What tools are you using these days for your diabetes management?
I am what you would call a T1D dinosaur, as I’ve never tapped into insulin pump therapy. About 18 months ago I broadened my scope of diabetes tools to include the Dexcom continuous glucose monitor. This device has absolutely changed my life and helps me regularly fine tune my diabetes regimen. It also provides me with educational opportunities when someone inquires about the device. My CGM has my back 24 hours a day and gives me much-needed peace of mind. I cannot imagine life without it.
What do you do professionally?
My professional career has a common theme—service over self. Shortly after graduating college, I founded SafeRide, a transportation system that is now run by my alma mater. In 2006, I opened the doors to Dreamer Concepts, a community artspace whose mission was to encourage, promote, and provide opportunities for growth for artists in my community. It was a true labor of love as it shifted my role from being an artist to the Executive Director of a non-profit organization.
In 2016, I completely shifted gears and served as Associate Director for Healthy Living OKC, an adult wellness center for individuals age 50+. This role broadened my depth of diabetes knowledge and compassion for people living with type 2 diabetes. After two years and growing the membership to 5,000+ members, I stepped down to pursue the Diabetes Daily Grind and Real Life Diabetes podcast full-time.
Most recently, I expanded my advocacy efforts and created the Real Life Diabetes Consulting group, whose mission is to bridge the communication and awareness gap between the patient and medical community. My team consists of people living with diabetes who share my personal mission to improve the lives of all people living with this disease and their families.
When did you first find the Diabetes Online Community (DOC)?
I discovered the DOC while doing research during the inception of the Diabetes Daily Grind, which I co-founded in 2014. I was blown away with the number of blogs and overall content. I dove right in and learned an exorbitant amount of information from fellow T1Ds. This discovery fueled my desire to share my very personal journey living with diabetes.
What was the original spark for Diabetes Daily Grind?
While at a local networking event, I met the mother of Ryan Fightmaster, the person who would become my professional collaborator on the Diabetes Daily Grind. Her name is Lori and she had spotted my T1D tattoo. After the usual exchange of commonalities, I shared that after living with T1D for 30+ years, I still did not know anyone at this point in my life who had the disease. The next week I met Ryan and his parents for happy hour. After connecting over stories of past diabetes debacles, we both realized we shared the same desire to help others. While on two very different paths, the similarities in our experiences with diabetes hit home.
We decided to work on a series of books focusing on the various stages of growing up with diabetes (childhood, teenage years, college life, etc.). Soon thereafter, we concluded our advice was more suitable for adult ears, so to speak, and thought a blog might be the best place to start.
Our overall inspiration was to provide “real” support for the diabetes life. In the doctor’s office, you never hear about how to get through real life situations (prom, running a marathon, getting sick overseas, international travel, dating, etc.). By starting the Diabetes Daily Grind, we resolved to save a few heartbreaks and time wasted on preventable mistakes. Our focus became to unlock the authentic lives of people with diabetes while overcoming the daily struggles.
And how did you get into podcasting?
A little over a year after launching the blog, we branched out to include the Real Life Diabetes podcast. Even though our blog readership was solid, we believed our voices might reach a larger audience via this outlet. With absolutely no experience, we rallied friends to help and launched the first episode in January 2015. The iTunes reviews and messages from strangers across the globe confirmed — there is no doubt this was the right decision. In 2018, I took the reigns of the blog and podcast as Ryan set off for his medical residency. What a ride.
What kinds of topics do you cover on the show?
No subject is off-limits and I found myself more vulnerable with every post and episode. With 70+ episodes and counting, 106,000+ downloads in all 50 US states and 119+ countries, it is clear that I have found my voice and true calling.
Congratulations on such a strong following! What would you pinpoint as the biggest change you’ve seen in diabetes care over the years?
Connectivity. I am pleasantly surprised on a daily basis by the level of connectivity within the vast diabetes community. I’ve learned so much from my peers, overcome fears and felt a genuine bond with people I’ve never met in person. I don’t believe in the theory, ‘misery loves company,’ but it is nice to know someone understands what I’m going through. The support groups, expos, conferences, summits, online platforms, podcasts and blogs have filled a much-needed void and confirmed: I am not alone.
A close second is the advancements in medical devices and insulin therapy. It is sometimes overwhelming, but truly a blessing to be a part of such an exciting time in the diabetes culture. I’m not holding my breath for a cure, but am thrilled to witness the actions of fellow PWDs (people with diabetes) who are not waiting and taking action.
What gets you most excited as to diabetes innovations?
The race is on! It is fascinating to witness the daily/weekly/monthly discoveries spanning from insulin pump therapy, smaller and more accurate CGMs to new and improved insulins. To see a 6-year-old Looping gives me hope for their future — a future with less pain, improved accuracy and an overall better quality of life.
Of course, access and affordability are huge issues… have you personally struggled with that?
Yes, I have. In 2011, while struggling to make ends meet while working for the 501(c)3 non-profit Dreamer Concepts organization, my income fell right at, if not below, the low-income bracket. I had NO idea how I was going to pay for supplies. My GP (general practitioner) came to the rescue and shared a program called Health for Friends that might be able to help. I was too embarrassed to apply and shocked when they contacted me. I sucked up my pride, applied and was quickly accepted into their program. My clinic visits were under $20, insulin was around $5 per bottle, and blood work and other tests were free. Just a few months later I joined their board of directors as a patient advocate because they went above and beyond to help me in my time of need.
Additionally, per my GP’s recommendation, I applied for a test strip scholarship through Abbott. I was accepted and the scholarship provided me with ample supplies at no cost. I was over the moon for about nine months until I received a letter stating due to the overwhelming demand, the scholarship would no longer be honored. I’m no rocket scientist, but it seemed rather ironic considering the circumstances.
If you could give advice to pharma and medtech industry leaders, what would you suggest they do better?
- Affordability & Accessibility: Everyone living with type 1 diabetes should have access to a CGM, a glucose meter including test strips of their choice, and plenty of insulin. No one deserves this disease, nor did they do anything to get it, so it is a basic human right to have what we need to survive.
- Empathy vs. Sympathy: No one enjoys going to the doctor and it pains me to hear so many horrible stories. Wouldn’t it be nice to have a one-on-one, honest conversation with your medical team without feeling judged or like you let them down? It is my intention with the Real Life Diabetes Consulting group to change this situation. Lines of communication between the patient and medical community have room to improve and will help both parties succeed in their wellness goals.
- Mental Health Awareness: Diabetes treatment needs to be a well-rounded experience to include mental health as a top priority. We do not get a day off or even a sick day when we’re ill. It can strain relationships, challenge career goals, and have you feeling like the world is against you. Addressing the issues and working towards self-acceptance would make a world of difference in the lives of so many people living with this disease. Diabetes decision fatigue is real.
Great list there! What were your thoughts behind applying for our DiabetesMine Patient Voices Contest?
Knowledge is power. For many people living with diabetes and their families, the advancements in diabetes management can be overwhelming. I am fortunate to have a social media platform and the ability to engage PWDs from across the globe.
I’ve seen the need for an ambassador for this disease — a real-life voice of someone who ‘gets it.’ I want to put the power back in the people who are living with diabetes in hopes it will guide the development of treatment therapies. As a delegate for the patient community, the ability to express our needs is a dream come true. I’m not shy and look forward to sharing this information with the masses.
What do you hope to contribute to this two-day innovation event, dubbed ‘DiabetesMine University’?
I am thrilled to be surrounded by PWDs and the companies who are working diligently to better our quality of life. I intend to soak up as much information as possible, ask the hard questions, and report back as to what I’ve learned on various social media platforms — all while hopefully balancing my BG while traveling (fingers crossed), and making new friends along the way.
Thanks, Amber. We look forward to welcoming you at our upcoming event!