🧬 What Causes Retinoblastoma?

Retinoblastoma is caused by a mutation in a gene called RB1, which normally stops cells from growing too fast. When this gene doesn't work properly, cells in the retina grow out of control and form a tumour.

There are two main types:

1. Heritable (Genetic) Retinoblastoma

• Present from birth (congenital).
• Can affect one or both eyes (bilateral or unilateral).
• Occurs in 1 out of 3 cases.
• Increases the risk of other cancers later in life (e.g., sarcoma, melanoma).
• May run in families.

2. Non-Heritable (Sporadic) Retinoblastoma

• Usually affects one eye (unilateral).
• Occurs by chance, not passed down from parents.
• Makes up 2 out of 3 cases.
• No increased risk of other cancers.

🛑 Important Note: Retinoblastoma is not caused by witchcraft, spirits, or curses. It is a medical condition that can be diagnosed and treated.

 

⚠️ Warning Signs and Symptoms

Early signs are often painless, so parents need to be alert. Seek help if you notice:

• White reflection in the eye (leukocoria) – appears like a white glow in the pupil, especially in flash photos or low light.
• Red or inflamed eye that does not improve.
• Strabismus (misaligned or squinting eyes).
• Enlarged pupil or abnormal eye shape.
• Different-coloured irises (each eye a different colour).
• Swollen or painful eye.
• Involuntary eye movements (nystagmus).
• Poor vision – difficulty focusing or tracking objects.
• Frequent bumps, falls, or clumsiness – may suggest visual problems.
• Child not responding visually to faces or toys.

📌 Red Reflex Test – shining a light into the child’s eyes can help detect abnormalities early.

 

🩺 How Is It Diagnosed?

• Eye examination by a specialist (ophthalmologist).
• Red reflex test – often done during routine newborn or child checks.
• Ultrasound of the eye to view the tumour.
• CT scan or MRI to check for tumour spread.
• Genetic testing (if available), especially in children with family history.

 

💊 How Is Retinoblastoma Treated?

Treatment depends on the tumour size, location, and whether one or both eyes are involved. It may include:

1. Chemotherapy
   • Medicines that shrink or kill cancer cells. May be given orally or intravenously.
2. Laser Therapy / Cryotherapy
   • Destroys small tumours using heat or cold.
3. Radiation Therapy
   • Rarely used today; uses high-energy beams to kill cancer cells.
4. Surgery
   • In severe cases, the affected eye may need to be removed (enucleation) to prevent the spread of cancer.

🎯 Good News: Many children retain vision in at least one eye and live healthy lives if treated early.

 

💞 Self-Care and Support for Families

Caring for a child with retinoblastoma involves medical, emotional, and social support.

👶 For the Child:

• Regular follow-ups with an eye cancer specialist (ophthalmic oncologist).
• Protective eyewear for children with one working eye.
• Good nutrition to support healing.
• Rest and play balance.
• Online learning support, especially if vision is affected.

👨‍👩‍👧‍👦 For the Family:

• Emotional support – talk openly, reassure your child, and seek counselling if needed.
• Bullying awareness – teach your child confidence; inform teachers about their needs.
• Peer support – connect with other families through hospitals or local support groups.

 

🛑 When to Seek Medical Help Immediately

See a doctor or nurse right away if your child has:

• A white glow in the pupil (especially in flash photos).
• Crossed or squinting eyes.
• Pain or swelling in the eye.
• Unexplained vision problems.
• History of retinoblastoma in the family.

Early diagnosis saves lives and vision.

 

🚫 Can Retinoblastoma Be Prevented?

There is no known way to prevent retinoblastoma. However:

• Early screening can detect symptoms before they appear—especially in families with a history of eye cancer.
• Genetic counselling and testing are advised for families with affected members.
• Regular eye checks for babies and toddlers are key.

 

🌍 Challenges and Areas of Improvement in Sub-Saharan Africa

✅ Challenges:

• Late presentation due to low awareness. 
• Preference for traditional remedies over medical care. Emphasis on wrong beliefs and traditional eye practices like putting breastmilk; urine, prayer water and other absurd things into the eye.
• Limited access to specialists and diagnostic tools.

 

💡 Solutions:

• Public education about warning signs in local languages.
• Training health workers to do red reflex tests in community clinics.
• Integration of eye checks into immunization and postnatal services.
• Subsidized treatment centres and free eye screening in high-risk areas.

 

🗣️ A Final Word to Parents

Retinoblastoma is not your fault, and it is not a spiritual issue. It is a medical condition that can be treated successfully if caught early. Even if an eye is lost, your child can survive, thrive, and live a joyful life.