Inherited Retinal Dystrophies And Finding Help

June 28, 2022 — Inherited Retinal Diseases (IRDs) are a group of rare eye disorders that can lead to severe vision impairment or loss, and are passed down through genetics. IRDs, also known as inherited retinal dystrophies or degenerations, damage the retina, the light-sensitive layer in the back of your eye that sends signals to your brain that help you see.

Causes and Symptoms

The most common symptom of IRDs is any sort of vision loss. Sight problems typically are degenerative, mild at first but may get worse over time. Depending on what type of IRD individuals have, symptoms can include:

  • Difficulty seeing at night
  • Loss of color vision
  • Light sensitivity
  • Loss of peripheral or central vision
  • Blind spots
  • Farsightedness

IRDs are caused by a genetic disorder that changes one or more genes in the body that affect proper retinal function. The genetic condition affects the gene’s ability to do its job properly, which is how vision loss can occur. Genes help instruct our bodies to make proteins, so when a gene changes, or mutates, the body loses its ability to create the protein or causes the protein to work improperly. With IRDs, mutations to one or more genes can cause cells to die in the retina, leading to vision loss.

There are more than 260 different genes known to cause IRDs, some more severe than others. The type of IRD you have depends on which gene is affected. IRDs can affect individuals of all ages, progress at different rates, and are generally rare..

Most Common Types of IRDs

  • Retinitis Pigmentosa (RP): A group of related eye disorders caused by variations in 60 genes that affect the retina. Individuals with RP experience vision loss that occurs as the light-sensing cells of the retina gradually deteriorate.
  • Choroideremia: A condition that causes progressive vision loss, most commonly diagnosed in males. Over time, a person with this condition will develop tunnel vision and lose their ability to see details, caused by a loss of cells in the retina and a nearby eye blood vessel, the choroid.
  • Stargardt Disease: Causes damage to the macula, a small area in the center of the retina that is responsible for sharp, central, and straight-ahead vision.
  • Cone-rod Dystrophy (CRD): A group of more than 30 IRDs that affect the eye’s cones and rods, the light sensitive cells found in the retina. Symptoms usually start showing in early childhood and most individuals lose a significant amount of vision by mid-adulthood.
  • Leber Congenital Amaurosis (LCA): One of the earliest onset forms of an IRD that typically causes severe visual impairment in infancy.

IRD’s Impact

Research shows that 1 in 2,000 people suffer from IRDs, affecting more than 2 million people worldwide. In addition, the economic impact of IRDs is approximately $31.7 billion annually, which accounts for medical appointments, treatments, medications, and more.

It’s essential to see your eye doctor for regular checkups and to monitor your vision daily to ensure you are not suffering from any type of IRDs or experiencing any form of vision loss. Leading patient assistance provider Accessia Health provides eligible patients with access to available financial assistance for IRDs and many other chronic illnesses and rare diseases.

Our Inherited Retinal Dystrophy Fund

Accessia Health has been assisting patients with IRD for several years. Our established Inherited Retinal Dystrophy Program provides financial assistance for copays, insurance premiums, medical expenses, and medical-related travel. 

For more information, or to see if you qualify for assistance in any of our available programs, check out our prescreening tool and apply today. You can also call us at 1-800-366-7741.*  

To support those seeking assistance with IRD, click here to donate. Make sure to designate your gift to the “Inherited Retinal Dystrophy Fund.”


*Please consult with your healthcare provider or seek professional medical treatment if you have any medical concerns. Please do not disregard any professional medical advice or take any delay in seeking medical treatment based on anything you may have read in this blog, on this website or in any linked materials contained within. Thank You.