Whatever you're feeling right now — terrified, overwhelmed, angry, numb, or weirdly calm — it's okay. There is no right way to process this in the first hours. Type 1 diabetes is a life-changing diagnosis. It doesn't have to be a life-limiting one.
This guide is for the first days and weeks. For the science and cost details, you can read the clinical guide →. This is for right now.
What to Do Right Now
1. Get to an endocrinologist or paediatric diabetologist as soon as possible — within days, not weeks. T1DM diagnosis requires specialist involvement, especially in the first weeks. Your GP can start treatment, but a specialist who manages T1DM regularly will set up the right regime, provide education, and connect you with a diabetes educator. If you can only access one specialist in the first month, make it this one.
2. Understand the two numbers you'll be watching every day. The HbA1c: your average blood glucose over the past 3 months — measured quarterly. Target for most people with T1DM: below 7%. Daily blood glucose readings: these change throughout the day based on meals, activity, stress, and insulin timing. Target ranges vary — your doctor will give you your personal targets.
3. Learn to give an injection. Today. If you've just been started on insulin (or your child has), ask the nurse or doctor to show you — and show you again — before you leave the hospital or clinic. The injection itself is not as bad as it looks. The needles are very small. Most people manage it within days.
4. Register for CDL 011 immediately. Your scheme must fund your insulin and blood glucose monitoring from the risk benefit under CDL 011. Do not pay for insulin from your savings or day-to-day benefit. Ask your doctor to help you submit the CDL registration form. Carry your medical aid card everywhere.
5. Connect with a diabetes education programme. A Certified Diabetes Educator (CDE) or specialist diabetes nurse is the single most valuable resource for a new T1DM patient. They teach carbohydrate counting, sick day rules, how to spot low blood sugar (hypoglycaemia), how to inject correctly, and how to adjust insulin. Ask your specialist or scheme about CDE programme access.
Your Questions, Answered
"Did I cause this? Did my child eat too much sugar?" No. Type 1 diabetes is an autoimmune disease. It has nothing to do with diet, lifestyle, or anything anyone did or didn't do. The immune system attacked the insulin-producing cells in the pancreas. The trigger is not fully understood. This is not a consequence of anything.
"Will my child be able to live normally?" Yes. T1DM requires daily management, but it does not prevent sport, school, relationships, career, or any of the things that make a life good. Many elite athletes, pilots, and professionals live with T1DM. The management learning curve is steep in the first months and becomes second nature over time.
"What is DKA? Should I be scared of it?" Diabetic Ketoacidosis (DKA) is a life-threatening complication that occurs when there is not enough insulin for the body to use glucose, and the body begins breaking down fat for fuel, producing toxic ketones. DKA can happen if an insulin dose is missed, during illness, or when insulin is insufficient. Symptoms: nausea, vomiting, abdominal pain, deep rapid breathing, fruity-smelling breath, confusion.
DKA is preventable with consistent insulin use and sick day management. Learning to recognise early warning signs and having a CGM (continuous glucose monitor) dramatically reduces DKA risk. Many T1DM patients go their entire lives without a serious DKA episode.
"What is a CGM and do we need one?" A Continuous Glucose Monitor (CGM) is a small sensor worn on the skin that reads blood glucose every few minutes and sends the reading to a phone or reader. The FreeStyle Libre 2 and Dexcom G7 are the most common in SA.
CGMs reduce HbA1c, reduce hypoglycaemia, and dramatically improve quality of life — especially for children and at night (when low blood sugar is most dangerous). They are R900–R1,400/month — a significant expense.
The CDL does not fund CGM as standard. Some schemes fund CGM for T1DM patients — ask yours specifically. If not funded, this is the single most impactful OOP healthcare decision for most T1DM families.
"Is there a cure coming?" Yes and no. Teplizumab (Tzield) is a medication approved in the US that can delay the onset of T1DM in at-risk individuals (not yet widely available in SA). Artificial pancreas systems combining CGM + insulin pump with automated dosing ("closed loop") are available and improving rapidly. Research into beta cell transplantation continues.
There is no cure today. There is better technology every year.
What the Next 3 Months Look Like
Week 1–2: Intensive education. Learning injections, blood glucose testing, low blood sugar treatment, meal timing. This is a steep learning curve. It gets easier.
Month 1: First HbA1c check. Dose adjustments. Follow-up with endocrinologist. Establish a GP relationship for between-specialist visits.
Month 2–3: Pattern management — learning how different foods, activities, and illnesses affect your glucose. School or workplace management plan. Consider CGM if not already using one.
After 3 months: Quarterly HbA1c; annual comprehensive review; flu vaccination annually.
What Your Medical Aid Should Cover
Under CDL 011: - NPH + regular insulin (CDL baseline) - Blood glucose strips (monthly PMB allocation) - GP management consultations - HbA1c 3-monthly - Annual comprehensive review (kidney function, urine albumin, ophthalmologist eye examination, foot examination) - Dietitian or CDE consultation (as per CDL algorithm)
Ask your scheme explicitly: - Does the scheme fund insulin analogs for T1DM on clinical motivation? - Does the scheme have a CGM benefit for T1DM patients? - What is the monthly strip allocation? - Is there a CDE programme for T1DM?
These four questions determine your actual annual OOP exposure. The difference between schemes that answer yes to all four and schemes that answer no can be R15,000–R25,000 per year.
One Last Thing
The first weeks with a T1DM diagnosis are the hardest. The injections, the numbers, the fear of hypoglycaemia — all of it is new and overwhelming. In 6 months, most families say the same thing: it's hard, but it's manageable. The numbers become familiar. The routine becomes automatic.
You will get to that place.
One day, one number, one injection at a time.
What does your scheme cover for T1DM? Check on AURA →
This article is for educational purposes. Work with your endocrinologist or diabetes team for your individual management plan.