Living with Isolated ectopia lentis
An eye condition in which the lens sits off-center, often causing blurry vision and nearsightedness.
Understanding Isolated ectopia lentis
It usually shows up in childhood, and the lens may drift further over time. People often have nearsightedness and blurry vision from astigmatism. Cataracts or glaucoma can develop earlier than in other adults. A few people have retinal detachment. It is called isolated when it occurs without signs in other body systems, unlike in Marfan syndrome or Weill-Marchesani syndrome.
Signs & symptoms
Symptoms vary from person to person, even within a family. GARD lists these among the most common:
- Lens off-center (ectopia lentis)
- Nearsightedness (myopia)
- Blurred vision from astigmatism
- Clouding of the lens (cataract)
- Increased eye pressure (glaucoma)
- Retinal detachment (in a few people)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include autoimmune and inflammatory disease specialists, eye disease specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The Marfan Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: The Marfan Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with The Marfan Foundation
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in genes (also called variants) cause this condition. It can be inherited in an autosomal dominant way (one changed copy is enough) or an autosomal recessive way (a changed copy from each parent).
Also known as: ectol1; ectopia lentis syndrome; familial ectopia lentis; iel; isolated lens position anomaly; nonsyndromic lens position anomaly
Patient organizations
- The Marfan FoundationIsolated ectopia lentis · United States
You are more than your diagnosis
Perspectives from people navigating life with Isolated ectopia lentis.
Explore research for Isolated ectopia lentis
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