Why Eye Exams Matter in Sickle Cell Disease: What Every Family Should Know
- Shaynise Robinson
- Jul 7
- 3 min read
Sickle cell disease affects every part of the body — the brain, lungs, liver, bones, and yes, the eyes. What many families don’t realize is that sickle cell can cause silent, progressive changes in the retina long before symptoms appear. That’s why regular eye exams aren’t optional; they’re essential.
Today, Raegan had her eye appointment. And just like her hematologist predicted, she does have early sickle‑cell–related retinal changes. They aren’t severe enough to require treatment right now — but they are important enough to photograph, document, and monitor closely.
And in true Raegan fashion, she added her own twist to the appointment: She’s officially joining Mom and Dad in the Four Eyes Club — she’s getting glasses!
🌟 Why Sickle Cell Affects the Eyes
Sickle cell disease causes red blood cells to become rigid and sickle‑shaped. These cells can block tiny blood vessels — including the delicate vessels in the retina.
According to the American Society of Retina Specialists (ASRS), sickled red blood cells can obstruct retinal and choroidal blood flow, leading to ischemia (lack of oxygen) and abnormal blood vessel growth. These changes can thin the retina, cause bleeding, or even lead to retinal detachment if not monitored.
The EyeWiki review (updated February 2026) explains that sickle cell retinopathy begins with small areas of hemorrhage (“salmon patches”), pigment changes (“sunbursts”), and vessel occlusion — often without any symptoms at all. Over time, these can progress to proliferative sickle cell retinopathy, where fragile new vessels form and may bleed or pull on the retina.
In other words: Damage can be happening even when vision seems perfectly normal.
👁️ What the Research Shows
1. Sickle cell retinopathy is common — even in children.
The Jamaican Cohort Study found that by age 20, 43% of people with HbSC and 14% with HbSS had retinopathy. Early changes can begin in childhood.
2. Many patients have NO symptoms until the disease is advanced.
ASRS notes that patients often have no eye symptoms at all — even with significant retinal involvement.
3. HbSC and HbS‑thalassemia carry the highest risk.
Proliferative retinopathy occurs in 33% of HbSC and 14% of HbS‑thalassemia patients, compared to 3% of HbSS . (This is why genotype matters.)
4. Vision loss can occur if retinopathy progresses untreated.
Complications include:
vitreous hemorrhage
retinal detachment
macular thinning
blind spots
severe vision loss
5. Annual eye exams starting at age 10 are recommended.
The American Academy of Ophthalmology recommends dilated retinal exams every 1–2 years beginning at age 10, ideally with a retina specialist.
Raegan is right on time.
🌈 Raegan’s Appointment: What We Learned
Today’s exam confirmed:
She has typical early sickle cell retinal changes
They are not severe, but not insignificant
Her ophthalmologist took retinal photographs to monitor progression
She will be followed closely to ensure changes don’t advance
And… she needs glasses — which she is surprisingly excited about!
For a child who has endured so much medically, glasses feel like a rite of passage — something normal, something fun, something she gets to share with Mom and Dad.
But the retinal findings remind us why these appointments matter.
🩺 Why Eye Exams Should Be Non‑Negotiable for Families Living With Sickle Cell
1. Early detection prevents vision loss
Retinopathy can progress silently. Imaging like OCT, fluorescein angiography, and ultra‑widefield photography can detect changes long before symptoms appear.
2. Children are at risk earlier than most parents realize
Studies show retinal thinning and vascular changes can appear before age 10.
3. Sickle cells affect the retina differently than other diseases
Unlike diabetic retinopathy, sickle cell often begins in the peripheral retina, where symptoms are harder to notice.
4. Monitoring helps guide treatment if needed
Laser therapy, anti‑VEGF injections, or surgery may be required if proliferative disease develops — but early monitoring can prevent progression.
5. Vision is part of quality of life
Children with chronic illnesses already face so many challenges. Protecting their vision protects independence, learning, and emotional well‑being.
💛 A Message to Other Parents
If your child has sickle cell disease, please don’t wait for symptoms. Don’t assume their vision is fine because they aren’t complaining. Don’t skip the yearly exam.
Sickle cell can affect every part of the body — including the eyes. And catching changes early can make all the difference.
Raegan’s appointment today was a reminder that vigilance is love. Monitoring is protection. And knowledge is empowerment.
And yes — we’re celebrating her new glasses, too. Because even in the hard moments, joy finds us.
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