Overview
Rare idiopathic macular telangiectasia (also called MacTel or idiopathic macular telangiectasia type 2, or simply MacTel type 2) is an uncommon eye disease that affects the macula — the small central part of the retina responsible for sharp, detailed vision. In this condition, tiny blood vessels in and around the macula become abnormal, leaking fluid or growing in unusual ways. Over time, this damages the light-sensitive cells in the center of the retina, leading to gradual loss of central vision. The word 'idiopathic' means doctors do not yet fully understand what causes it, though research suggests a combination of genetic and environmental factors may play a role. The most common symptoms include blurry or distorted central vision, difficulty reading fine print, and seeing a gray or dark spot in the center of your visual field. Side (peripheral) vision is usually not affected. The disease tends to progress slowly over many years and typically affects both eyes, though one eye may be worse than the other. Currently, there is no approved cure or treatment that fully stops the disease. Some patients with abnormal blood vessel growth (called neovascularization) may benefit from injections into the eye (anti-VEGF therapy). Researchers are actively studying new treatments, including a promising approach called ciliary neurotrophic factor (CNTF) delivered via a small implant in the eye. Low vision aids and rehabilitation services can help people adapt to vision changes and maintain quality of life.
Key symptoms:
Blurry or distorted central visionDifficulty reading fine print or recognizing facesA gray, dark, or missing spot in the center of visionStraight lines appearing wavy or bentColors appearing less vivid or washed out in the center of visionNeeding brighter light to readSlow loss of sharpness in central vision over timeDifficulty with tasks requiring fine detail, like threading a needleOne eye may seem worse than the other
Multifactorial
Caused by a mix of several genes and environmental factors
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Rare idiopathic macular telangiectasia.
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Specialists
View all specialists →No specialists are currently listed for Rare idiopathic macular telangiectasia.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Rare idiopathic macular telangiectasia.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How advanced is my MacTel, and which stage am I at?,How often should I come in for monitoring, and what tests will you use to track changes?,Do I have any signs of abnormal blood vessel growth that need treatment now?,Are there any clinical trials I might be eligible for?,Should I be referred to a low vision rehabilitation specialist?,Is there anything I can do — such as diet, supplements, or lifestyle changes — that might help protect my vision?,Should my family members be screened for this condition?
Common questions about Rare idiopathic macular telangiectasia
What is Rare idiopathic macular telangiectasia?
Rare idiopathic macular telangiectasia (also called MacTel or idiopathic macular telangiectasia type 2, or simply MacTel type 2) is an uncommon eye disease that affects the macula — the small central part of the retina responsible for sharp, detailed vision. In this condition, tiny blood vessels in and around the macula become abnormal, leaking fluid or growing in unusual ways. Over time, this damages the light-sensitive cells in the center of the retina, leading to gradual loss of central vision. The word 'idiopathic' means doctors do not yet fully understand what causes it, though research s
How is Rare idiopathic macular telangiectasia inherited?
Rare idiopathic macular telangiectasia follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Rare idiopathic macular telangiectasia typically begin?
Typical onset of Rare idiopathic macular telangiectasia is adult. Age of onset can vary across affected individuals.