We are delighted to feature Erum and Erin as the advocates of a person with diabetes (PWD). PWD contemplate over 200 additional decisions in an average day, compared to one without diabetes.
Erin has been living with diabetes since her childhood, and Erum since young adulthood. Both have a lot of wisdom that I have learned as a healthcare provider. Erum and Erin are teachers about diabetes and leaders. They are part of IDF Young Leaders who mentor and support other kids and young adults with diabetes. September is all about awareness of kids living with medical conditions. That said, I would like to celebrate, reflect and inspire not only kids living with diabetes, but healthcare professionals partnering with the journey.
Erum, what can we do better as diabetes educators when creating concordance with PWD?
I have been living with type 2 diabetes since I was 17 years old and was the first case of type 2 at the age of 12 years at Baqai Institute of Diabetology and Endocrinology (BIDE). It is a pioneer tertiary Diabetes care center in Karachi, Pakistan. Now I am working as senior diabetes educator for the last 11 years in the same premises.
I have lived with all the typical phases of diabetes since childhood. In my perspective, our health care professionals try their best to help type 1 children by suggesting insulin regimens, patterns of physical activity and provide great dietary advice, but the diabetes puzzle remained unsolved for a long time. We are moving towards scientific advances such as insulin pumps and CGM systems, but what matters is, how much we are gaining in the scientific world because the missing block of this unsolved puzzle is diabetes education. We still have wide communication gaps between healthcare providers and people with diabetes, especially children. We must learn that advances will only work when people understand their health situation and what HCPs are trying to convey. Diabetes is a lifelong disorder so they should learn how to cope with their available resources. Now days, people with diabetes don’t want lectures and neither want someone who will organize their lives which we are practicing as health care providers. They want to learn how they can manage diabetes by themselves. It is only possible when HCPs would learn to take mutually informed decisions about their treatment and self-management plans. We need special type1 clinics where children wouldn’t have any interaction with type 2 diabetics. I have observed that when type 1 children interact and watch the complications of type 2 diabetes under the same roof, then it gives adverse psychological impact on them. We also need specially trained educators who can deal with type 1 children as per different phases of their lives. It is essential to share their vision instead of imposing our vision on them. We should be empathetic rather than being sympathetic.
Erum, what does the future hold for kids living with type 1 diabetes?
Children are our future. Their welfare is one of the few things that everyone in the world would agree is worth striving for. Though there are many countries including Pakistan where many issues are a potential threat to the future of children with type 1 diabetes such as access to insulin and glucose monitoring accessories, individual and societal costs of diabetes, equal rights in educational and employment sector.
A study from Sweden found that the presence of diabetes had an adverse effect on children’s final grades and those who had diabetes as children were less likely to be gainfully employed even at the age of 29. But on other side of the coin, I am also observing a gradual but very positive change. I have served as faculty member in the young leaders program by the International Diabetes Federation and several other international youth programs. Many young ladies and gentlemen are learning to voice their needs through such platforms. I know a few of them who are even successful to raise their voice to governments and authorities in their respective countries. They are learning to prove that they are equal to others children/ youngsters without diabetes and have equal rights to live a happy life. In my opinion, that is a bright start for a promising future.
Erin, what are your suggestions to children diagnosed with diabetes - what did we as healthcare providers (HCP) do well vs not so well?
My healthcare providers did an outstanding job of involving my parents in a lot of the decision making regarding my treatment. Since I was diagnosed around the age of 11, it is a strange time where you're almost a teenager, but not quite. Unfortunately my HCP did a terrible job of really listening to me or consulting me before making decisions regarding my care. So much of my care was delegated out to the team, I think I felt like an invisible person in the room, unable to share my concerns or opinions.
Erin, please tell us more about your personal vs professional mission?
My personal mission and professional mission are very closely tied. Next to where I sleep I keep a framed paper of all my goals over my lifetime. It states my life purpose is "to create an equitable health system for all". This is what I see as my modus operandi and most of my personal and professional choices go hand in hand. Under my lifetime goals I have milestones like "change America's healthcare system...empower 5000 like-minded leaders...prevent 40 million deaths around the world...develop a NCD global fund in America". At the bottom of the page it says that I will be known in my community as the advocate for salutogenesis. Most of my friends and professional networks know me in this regard and know my dedication is more than a job, it's a lifelong goal I am committed to achieving and supporting others who to build a better world than what we currently have.
Erum and Erin, what does the future hold for kids living with type 1 diabetes?
Unfortunately the answer to this question largely depends on factors that are way beyond the scope of one person. I think the world will continue to move towards polarizing extremes: amazing medical advances, but with technology missing the reach of many people who cannot afford it. One thing that has been extremely different between Type 1 from previous generations versus Millennials, has been the changing dynamic of employment. From an economic perspective, employment moving away from traditional roles will continue to influence the ability to get access to care all over the world, as well as a need to build more affordable models to ensure that patients can support one another rather than depending on a broken system. Type 1 is a very strong community, but there is a lack of education around the world on the differences between Type 1 and Type 2, which will become more frustrating as Type 2 becomes a challenge for governments and policy makers to address.
Can you each provide your top 3 tips for children with diabetes?
- There is no such thing as control, and anyone who says otherwise is kidding themselves.
- No one can hold you back but yourself, because truly anything is possible if you are willing to work for it. What may be perceived as a weakness can be a source of great strength and resilience later in life.
- Read as much as possible regarding your treatment to be ready to challenge your doctor. You are your best advocate and no one can do the hard work but you. Remember your HCP’s are there to help you, but ultimately you are paying them to make you a better patient, not just perform the status quo.
- Aim for progress towards better life instead of perfection. Diabetes is a disorder not a disease. Keep your inner voice kind and supportive.
- We are as normal as anyone else and we can hit any height of success. We are special, as God has chosen us to live a disciplined life.
- Seek help when you get confused or feel sick. Talk to your family, friends and health care team. They love you and are always there for you.