Painful Story of Kenyan Teenager Forced to Wake Up Every Hour as Rare Disease Disrupts Her Sleep

A 19-year-old Kenyan woman, Rahab Nyambura, is facing an unusual medical battle that has made uninterrupted sleep almost impossible. Her condition requires her to wake up every hour during the night to monitor her blood sugar levels and take snacks to prevent potentially dangerous complications.

Rahab’s story, highlighted by the Daily Nation, sheds light on the challenges faced by patients living with rare diseases in Kenya, particularly those requiring specialised treatment and long-term medical supervision.

Her health struggles reportedly began in 2023 when she developed symptoms including swollen legs, persistent headaches and vomiting. She was initially diagnosed with diabetes and placed on treatment, but her blood sugar levels continued dropping unexpectedly despite adjustments to her medication.

She was subsequently referred to Kenyatta National Hospital, where specialists conducted further investigations to establish the cause of her recurring episodes of low blood sugar.

Doctors Discover Rare Pancreatic Disorder

After extensive medical examinations, Rahab was diagnosed with nesidioblastosis, a rare condition involving abnormal growth or activity of insulin-producing cells in the pancreas.

Insulin helps regulate blood sugar, but excessive production can cause glucose levels to fall dangerously low, a condition medically known as hypoglycaemia.

According to the report, doctors found that Rahab’s condition affected the pancreas more extensively, making surgery a complicated option. Removing the organ could expose her to other serious health problems, including diabetes and difficulties with digestion.

Her treatment has therefore focused on controlling the condition through medication, close monitoring and measures aimed at maintaining safer blood sugar levels.

An Hourly Routine That Leaves Little Room for Rest

For Rahab, going to bed does not mean enjoying a full night of sleep. She reportedly sets alarms at hourly intervals so she can check her glucose levels and eat something before they fall dangerously low.

Her nighttime routine may involve eating bread, biscuits or other snacks, depending on her needs. She must remain alert to warning signs such as sweating, dizziness, weakness and confusion.

Severe hypoglycaemia can become life-threatening if it is not addressed promptly. This makes regular monitoring an essential part of her daily life, even though the routine leaves her physically and emotionally exhausted.

The condition has also affected her independence, as she must carefully organise ordinary activities around her medical needs.

Education Interrupted by Prolonged Hospitalisation

Despite her health difficulties, Rahab has continued to demonstrate determination to pursue her education. During her extended stay at Kenyatta National Hospital, she reportedly sat her Kenya Certificate of Secondary Education examinations from within the hospital ward.

Her performance earned her an opportunity to pursue further studies, including an offer to study psychology at Mount Kenya University. She later considered cybersecurity studies at Daystar University, partly to remain closer to her family and medical care.

However, her plans have been disrupted by recurring medical complications and the need for continued treatment.

After doctors attempted to discharge her in September 2026, she reportedly returned to hospital following an infection involving her feeding tube. Her medical team has continued working to establish a safer way for her to manage the condition outside the hospital.

Financial Challenges and the Need for Better Support

Rahab’s prolonged hospitalisation has also placed a financial burden on her family. The Daily Nation reported that her hospital bill underwent a review by the hospital’s credit committee, which waived the bill to facilitate her discharge, although arrangements concerning the outstanding amount remained necessary.

Her experience highlights the difficulties families can face when caring for someone with a rare condition requiring specialised attention over an extended period.

The case also raises questions about access to specialised diagnosis, treatment and support for patients with uncommon diseases in Kenya.

Medical professionals have noted the challenges of determining how many people live with such conditions because the country lacks a comprehensive national registry covering rare diseases.

For Rahab, the immediate challenge remains managing her blood sugar while trying to regain stability and resume her educational journey.

Her story is a reminder that rare illnesses can affect far more than a person’s physical health. They can disrupt sleep, education, family finances and everyday independence, making sustained medical care and social support essential.

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