Misdiagnosed and Delayed: Asra Ahmed on a Lifetime with Type 1 Diabetes

Even with both parents working in medicine, the signs of type 1 diabetes were not immediately recognized. 

Today, Asra speaks openly not only as someone who has lived through decades of challenges with diabetes, but also as a mother determined to give her daughter something she never had herself: understanding, emotional support, and the confidence to live beyond the condition. 

Through her advocacy, education work, and lived experience, she has transformed years of uncertainty into a mission to help other families avoid the same struggles and to show that knowledge and early action can truly change lives.

The Beginning Nobody Expected

It started in a hospital lab in Jeddah when Asra was a biochemistry student doing her clinical placement. Out of curiosity, she asked for her own blood sample to be used as a control.

The result came back at 243 mg/dL fasting glucose. She felt completely normal. No symptoms, no warning signs, no reason to suspect anything serious. Just a number that didn’t fit the expectations of anyone around her.

At home, the reaction was disbelief. Both parents were doctors, and the first response was to question the result rather than accept it. Faulty equipment, lab error, anything but diabetes. The test was repeated. The result didn’t change.

Confusion Instead of Clarity

What followed was not a clear diagnosis, but disagreement. One physician incorrectly labeled it type 2 diabetes and prescribed metformin. Another suspected type 1 and recommended insulin. No proper confirmatory testing was done at that stage.

Metformin was chosen, and with it came months of persistently high glucose levels and no real understanding of what was happening in her body. There was treatment, but no education. Control, but no context.

The Real Diagnosis, Delayed

Only later, in Oxford, did the full picture become clear. Proper testing with antibodies and C-peptide confirmed autoimmune type 1 diabetes.

By then, valuable time had already been lost under the wrong classification.

There was no dramatic relief—just correction, and the beginning of a much longer process of learning everything on her own.

Living in Silence

After starting insulin, Asra was told not to disclose her condition. Diabetes became something private, hidden.

Over time, even routine monitoring became inconsistent, not because of indifference, but because no one had explained what consistent management really required.

So she learned independently through medical journals, forums and online communities. Slowly, she built her own understanding of a disease that had never been properly explained.

Pregnancy and Unanswered Questions

Later, she became pregnant. The medical information she received was limited and poorly contextualized. Her HbA1c values were described as “acceptable,” without a clear explanation of risk.

An emergency C-section changed everything. Only afterward did she discover that her HbA1c had reached 12.9 percent at the time of delivery.

Her baby spent a month in neonatal intensive care. No simple cause existed, but the lack of communication and structured education left a lasting emotional impact.

Hypoglycemia and Memory Loss

Over time, hypoglycemia (low blood glucose level) became one of the most dangerous aspects of her life.

Episodes didn’t just cause symptoms—they erased memory. There were entire events she could not recall. Injuries, Asra only learned about from others. Night-time seizures were witnessed by the family but absent from her own memory. It wasn’t just a medical risk. It was a fragmentation of lived experience.

The Moment Everything Changed

After more than two decades living with diabetes, a physician saw protein in her urine and spoke as if kidney failure was inevitable.

There was no prevention plan, no guidance, no structured pathway forward. Just a statement of expectation. That moment shifted something in her. She refused to accept that the outcome was already decided

Rebuilding Control

From that point, she began actively reshaping how she lived with diabetes. Diet changes, structured exercise, and years of self-directed learning followed.

Later came technology—continuous glucose monitoring (CGM) and insulin pumps—which finally gave her visibility over patterns she had spent years trying to understand blindly. For the first time, she could connect actions with outcomes in real time.

Becoming an Educator

Before diabetes became her central focus, Asra worked in education, designing and learning frameworks for children with learning differences.

That experience shaped how she later approached diabetes education: simplifying complexity, making it practical, and adapting it to real life.

She began working with communities, running workshops, supporting informal education groups, and training others in diabetes management. Over time, this evolved into formal work in diabetes care improvement and academic study at the University of Warwick.

But her approach remained consistent: diabetes education matters only if it works in real life.

Her Daughter: What Matters Most

Everything changed again when her daughter was diagnosed during the COVID period.

A glucose reading of 543 mg/dL confirmed what she already suspected. She acted immediately—sensor placed, insulin started, hospital involved. There was no hesitation. In that moment, everything she had learned over decades became immediate action. The crisis was managed quickly, almost instinctively.

But something else also became clear.

For all her experience and knowledge, her daughter needed something different from her: space. Time. And the ability to process what was happening emotionally, not just medically.

Asra realized that she had moved so fast into “problem-solving mode” that she almost skipped the emotional reality her daughter needed to live through.

What Truly Matters Now

Today, when Asra speaks about her life, she is clear about one thing: her daughter is what matters most to her.

Diabetes is part of her life, but it is not the center of it. The center is her family, and especially ensuring that her daughter is supported not just medically but also emotionally and psychologically. 

Alongside that, her second priority has become equally important: helping others.

Because what she experienced—misdiagnosis, silence, lack of education, delayed clarity—is not unique. It is systemic. And she knows that many of the hardest moments in her life could have been avoided with early screening, better education, and clearer communication.

Asra’s story is not just about living with type 1 diabetes for 38 years. It is about what happens in the gaps: between diagnosis and understanding, between information and communication, between treatment and education.

But when she talks about it now, she does not frame it as a story of loss. She frames it around two things: her daughter and the people she can still help. 

Because in the end, that is what has stayed constant through everything—the desire to protect her child, and to make sure others do not have to learn the hard way what she had to learn alone.