Mohammad Al Bahar is an advocate and committee associate to the League of DiAthletes, and an active name across the type 1 diabetes world with his social media account of The Diabetic Traveller. Mo, from Kuwait, has lived with type 1 diabetes for 34 years and is the founder of the Diabetes Ambassadors Program (DAP). In this Diaview, Mo gives a backdrop into his work with DAP and living with type 1 in Kuwait.
- Can you tell us about the experiences of when you were diagnosed: how you / your family reacted & how big a challenge was it to adapt to?
“I was diagnosed with T1D when I was 2 years old, so I don’t recall the memory of my early diagnosis, my parents noticed I was very thin, pale and drank water and urinated more than usual, one day I peed on the carpet and the ants started gathering on the urine, so my parents took me to the hospital and after the tests came out my parents were informed by the doctor that the results were positive of me being diagnosed as a T1D.
It was very challenging as 1985, having a child living with T1D was very rare, that to survive your child must take injections many times a day, the food consumption must be specific, as in those days there was no carb counting, nor flexibility in medication to be able to eat what you desire, certain type of food have to served on fixed timing of the day. There was lack of blood testing devices as well during that time, as lancets and blood strips are not available and if they were available they were expensive, so the best solution was to use urination strips to check the ketones as well as blood sugar (although they are less specific about Blood Glucose levels).
I didn’t struggle with my Diabetes in the early years, I started to have plenty of issues with my diabetes when I was in my adolescent years, I started to rebel on the condition, which lead to burnout and that eventually lead to depression for 13 years.”
- As a ‘patient,’ how would you personally describe diabetes health care in your country – from access to education – what are the strong points / what are the negatives, and where would you like to see changes implemented in care?
“The healthcare system in Kuwait covers insulin, insulin pens, insulin pumps including their supplies as well as the pump CGM, as well as urination tests, but It doesn’t cover blood testing devices and their supplies, DEXCOM, FreeStyle Libre and other CGMs that are not connected to a pump are not covered as well.
There is segregation by doctors that have the authority to either provide or not their patients with certain devices such as DEXCOM CGMs if the patient was 4 years or younger the doctor can subscribe the pump for them, and above that age is not qualified to have the CGM, people living with T1D that ae above adolescent age, and that are considered as adults lack access to educational programs (except DAFNE, which provide basics of carb counting, diabetes management in certain areas such as sick days, sports and during pregnancy), there is no coverage of the Mental Health aspect in the national healthcare system in Kuwait, if you are going through depression or other mental health issues you have to pay from your own pocket for a private session with a mental health professional, which can cost a lump-sum.
There should be changes implemented in the healthcare system, such as covering blood testing devices along with their supplies, CGM devices, have a variety of educational programs for adults that also cover the mental health aspect, which is neglected in the healthcare system spectrum. There should be a connection between healthcare providers as well as patients, to connect and to fill the gap, through involving patients and people affected by diabetes in the decision-making process. Mental Health should be part of the national healthcare system coverage. There should be a variety of pump options available for people living with diabetes rather than having one option available.”
- What types of activities does DAP work on in helping people with diabetes, and why?
“Diabetes Ambassadors Program, mission is to empower people living with Diabetes, our vision is to live a healthy and a productive life with Diabetes. We are mainly focused on the following components:
- Education/ Awareness:
The education and awareness segment includes lectures in schools and social media posts (Facebook, Twitter, Instagram and Snapchat).
- Insulin Access:
DAP is currently working with T1International regarding Diabetes Access Advocacy Toolkit. The latest campaign was regarding insulin access for Syrian refugees and currently T1International and DAP are working on the Diabetes toolkit generated by T1Int.
The advocacy tasks involve attending local and international workshops and congress. TV & Radio interviews is included under this component.
- People living with diabetes Laws & Regulations:
This component is dedicated to the development of a Kuwait law that protects the rights of people living with diabetes, either for their career growth, social and child rights.
- Group Session:
This component includes:
Group discussion session; for people living with diabetes, to have an open discussion about a specific subject related to diabetes, held once every two weeks or once a month.
Sports Clinic; this is mainly about sports activities, that involve people living with Type 1 Diabetes as well as their partner, family member of a person living with and affected by Diabetes, this part also helps in educating people about diabetes through interactive sports activities, and how sports do have a positive impact on their health and well-being.
This component is mainly focused on the daily routine of people living with diabetes. Such as sports, extreme sports, travel, adventure, as well as their involvement in the social responsibility activities. This will reflect the knowledge and well-being of people living with diabetes, and as an outcome result of the previous components.”
- Can you share with us about a negative or challenging experience that you have faced living with diabetes?
“Through my adolescent years and to my late 20’s I was deeply depressed due to diabetes burnout for so many years due to lack of family support and understanding as well as the national health system in Kuwait doesn’t take into consideration that people living with diabetes are more vulnerable to mental health issues, and require in some cases mental healthcare professionals, so imagine living with a chronic condition, plus having frequent hypos (6 to 7 times a day), and don’t have anyone from your family to discuss this matter with, as in our culture if you needed to see a mental healthcare professional the idea that goes into their head that you’re a psychopath, or someone that lacks faith, so the best solution is to strengthen your faith and that the mental health matter is an exaggerated topic, that shouldn’t be discussed with anyone, because if you did that makes you less accepted in society and that may lead to misjudgement by the society, so better resolve this issue by yourself, which can be very depressing, as well as energy and time consuming.
There is a huge gap between healthcare providers and people living with diabetes in Kuwait, that doctors and healthcare professionals want to be the ones in charge of diabetes management procedures, that they rarely take into consideration the patient point of view, or even have the willingness to listen and to have empathy towards them.
Many topics related to living with diabetes in our society is being avoided, as it is considered to be a very sensitive topic to talk about in public such as sex, marriage, pregnancy, alcohol and drugs, as these topics are considered to be very critical and should not be discussed bluntly with the public.”
- Can you share with us about a unique positive experience you have had through living with type 1 diabetes?
“I have overcome my fear with hypos; that consumed my energy, productivity, and time, getting exposed to frequent hypos on daily basis for 4 years can be very frustrating and depressing, as if your losing control of your own body.
I used to avoid topics related to diabetes during my puberty years as well as my early to mid-20’s, as I considered it as a weakness and a shameful matter to talk about, but after accepting my diabetes I became fully aware of my condition and accepting myself for who I am, and what I can achieve with Type 1 Diabetes, that it shouldn’t limit me from living life to the fullest but to help me be compassionate, caring, understanding and accepting myself and others, that certain measures should be taken into consideration regarding diabetes on regular basis. I became a public speaker and an advocate for people living with diabetes in my country and the global community.”
Meeting people from around the world that are living and thriving with T1D is a unique experience, that opens many doors for us all as a community, to share, learn and educate, to have full awareness of our condition and what we can achieve.”
- From all your experiences so far in living with this condition, what would be a key message you would like to share with others living with type 1 diabetes out there?
“Diabetes is a beautiful condition, that once you accept and understand it you will know that it is a condition that fills your soul with passion, hope, care and love. That it can be sometimes a flow of emotions during hypos and hypers but at the same time it is a flow of honesty, beauty, power to make a difference in this world for those whom are less fortunate. Accept it, understand it, flourish with it, and thrive with it’s blessings.”