A CALL TO EMPOWER, EDUCATE AND MANAGE TYPE 1 DIABETES AMONG YOUNG PATIENTS


Type 1 diabetes currently affects about 10,200 people in Malaysia, the majority of which are children and adolescents.

WHEN it comes to the discussion on health, Malaysians are quite familiar with the topic of diabetes, particularly type 2 (T2DM), seeing as it is the most common of the two types.

According to the National Diabetes Registry Report 2020, 99.33% of the recorded diabetic patients are type 2. This astonishing figure equates to 1,687,384.

In contrast, people with type 1 diabetes (T1DM) only make up 0.59%, according to the 2020 report. While a small fraction, this still means that 10,184 people have to go through life with this chronic non-communicable disease.

T1DM is the most common form of childhood diabetes in Malaysia, accounting for 73% to 77% of all childhood diabetes, according to data from the Diabetes in Children and Adolescents Registry (e-DiCARE).

T1DM is an autoimmune condition where the body's immune system mistakenly attacks and destroys the insulin-producing cells in the pancreas.

Unlike T2DM, which is often linked to lifestyle factors and insulin resistance, T1DM is not preventable and is not associated with lifestyle choices. It is also less forgiving in its mortality rate and warning signs.

Individuals with T1DM are dependent on insulin injections for survival, as the pancreas is unable to produce insulin. This lifelong reliance on insulin introduces unique challenges, such as the need for precise insulin dosage management and frequent blood sugar monitoring.

Symptoms of T1DM

The abrupt manifestation of T1DM symptoms includes excessive thirst, frequent urination, sudden weight loss and fatigue. Early detection is crucial to prevent complications, and T1DM patients must navigate a delicate balance between insulin administration, diet and lifestyle adjustments.

Diabetic ketoacidosis (DKA), a significant indicator of T1DM diagnosis, is a serious and potentially life-threatening complication.

Symptoms of DKA include abdominal pain, vomiting, respiratory difficulties and elevated blood glucose levels. However, these symptoms often lead to misdiagnosis, as they can mimic other common diagnoses in younger patients, such as acute gastroenteritis or respiratory problems.

DKA is a result of insufficient or no insulin in the body. As such, the body is unable to use glucose for energy and instead breaks down fats for fuel.

When the liver breaks down fats, it produces chemicals known as ketones. While it is safe and normal to have a low level of ketones in the blood, excess of this chemical build-up in the blood can turn acidic and cause DKA symptoms to present themselves.

Understanding the gaps and challenges in T1DM management

Beyond the scarcity of national prevalence data, the complexities of treating young T1DM patients extend beyond medical concerns to social issues.

Changing Diabetes in Children (CDiC) project chair Dr Nurain Mohd Noor and co-chair Prof Dr Muhammad Yazid Jalaludin shed light on some of the challenges and advancements in managing T1DM.

Dr Muhammad Yazid outlines three significant challenges in T1DM management: the burden of daily insulin injections, access to insulin, and understanding blood sugar fluctuations.

Dr Muhammad Yazid calls for a collaborative effort to empower and educate patients.Dr Muhammad Yazid calls for a collaborative effort to empower and educate patients.

Managing T1DM necessitates multiple daily insulin injections, a demanding routine that can significantly impact both patients' physical and emotional well-being.

Dr Muhammad Yazid emphasises the emotional toll of self-administration, highlighting the lingering sense of shame and embarrassment that can debilitate a patient's self-esteem.

For some, navigating a complex medical regimen while confronting the emotional and social repercussions of living with a chronic condition makes self-administration of insulin a daunting task.

Another significant challenge in T1DM management is the intricate task of understanding blood sugar fluctuations.

Patients must conduct multiple blood sugar checks throughout the day, incurring substantial out-of-pocket expenses.

Dr Muhammad Yazid acknowledges that this financial strain can affect the regularity of blood sugar monitoring, impacting the overall management of the condition.

Dr Nurain advocates for a holistic approach to type 1 diabetes management, emphasising the crucial roles of healthcare providers and parents. Dr Nurain advocates for a holistic approach to type 1 diabetes management, emphasising the crucial roles of healthcare providers and parents.

Caring for young T1DM patients

Adolescents with T1DM, yearning for normalcy among peers, may struggle to adhere to treatment plans.

Dr Nurain emphasises that healthcare providers and parents play pivotal roles in offering support and understanding, as well as recognising the importance of tailoring approaches to the patient's developmental stage.

Part of CDiC’s efforts is to bridge critical gaps in healthcare for young T1DM patients by integrating with local healthcare systems and providing patients and caregivers with adequate support and education.

In the past, doctors would have a very strict and stern outlook in advising patients on how to live with T1DM. She believes that while this may work for some patients, it will not be sustainable in the long run.

She encourages healthcare providers and parents to tailor diabetes management approaches to suit the patient’s developmental stage to ensure better, long-term adherence to treatment plans, underscoring the importance of fostering a supportive ecosystem.

Initiatives for better T1DM patient care

The Malaysian Endocrine and Metabolic Society (MEMS) plays a pivotal role in addressing the gaps in T1DM care.

MEMS was founded to grow the knowledge and improve the practice of endocrinology in medicine. Presently, endocrine courses and workshops are conducted annually for postgraduate doctors and general practitioners.

It is also working closely with Danish pharmaceutical company Novo Nordisk and Swiss healthcare company Roche as well as other partners on a collaborative initiative under CDiC, Malaysian chapter to empower and educate young patients with T1DM, together with their healthcare providers and parents.

CDiC is a globally implemented project name for public-private partnership across 28 countries that aims to provide comprehensive care for patients living with T1DM, including free life-saving medicine and supplies for patients up to 25 years old.

This effort aims to alleviate the financial burden associated with managing diabetes by providing free blood sugar strips for the next five years, a significant advance in the management of diabetes in children and positive steps forward in combating stigma and improving the lives of those silently battling T1DM.

With education being a crucial component in equipping communities and fostering a deeper understanding of T1DM, under the CDiC project, MEMS has plans to increase and improve diabetes resource centres nationally.

This expansion aims to provide patients with certainty and support from the moment of diagnosis throughout their journey of learning to live with the disease.

Dr Nurain also emphasises the importance of better-equipped healthcare providers to instil confidence in their patients throughout the treatment process.

To achieve a comprehensive understanding of T1DM and better management of patients, MEMS has ambitious plans to establish a registry that can collect invaluable data and facilitate research breakthroughs to further enhance patients’ quality of life.

This is a disease awareness and educational message brought to you by Novo Nordisk Pharma Malaysia.

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