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Click on the links below to explore information and resources.
on specific conditions that have been featured
during CBSS Training & Outreach activities.

For more information on specific conditions not featured on this page,
please visit the National Center for Deaf-blindness website (here…)

CHARGE Syndrome
Congenital Rubella Syndrome (CRS)
Cortical Visual Impairment
Deaf-blindess (Dual Sensory Impairment)
— includes resources for “deafness” and “blindness” 
Retinopathy of Prematurity (ROP)
  • Definition: From the National Eye Institute website — Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation. (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness. ROP was first diagnosed in 1942.
  • ROP Stages: From the National Eye Institute website — 
    • Stage I — Mildly abnormal blood vessel growth. Many children who develop stage I improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
    • Stage II — Moderately abnormal blood vessel growth. Many children who develop stage II improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
    • Stage III — Severely abnormal blood vessel growth. The abnormal blood vessels grow toward the center of the eye instead of following their normal growth pattern along the surface of the retina. Some infants who develop stage III improve with no treatment and eventually develop normal vision. However, when infants have a certain degree of Stage III and “plus disease” develops, treatment is considered. “Plus disease” means that the blood vessels of the retina have become enlarged and twisted, indicating a worsening of the disease. Treatment at this point has a good chance of preventing retinal detachment.
    • Stage IV — Partially detached retina. Traction from the scar produced by bleeding, abnormal vessels pulls the retina away from the wall of the eye.
    • Stage V — Completely detached retina and the end stage of the disease. If the eye is left alone at this stage, the baby can have severe visual impairment and even blindness.
  • More: Most babies who develop ROP have stages I or II. However, in a small number of babies, ROP worsens, sometimes very rapidly. Untreated ROP threatens to destroy vision. Infants with ROP are considered to be at higher risk for developing certain eye problems later in life, such as retinal detachment, myopia (nearsightedness), strabismus (crossed eyes), amblyopia (lazy eye), and glaucoma. In many cases, these eye problems can be treated or controlled.
  • Link: Learn more about ROP, including causes, treatment, research, and current relevant news and issues on the National Eye Institute (NEI) website here… 
  • Link: ROP page on the American Association for Pediatric Ophthalmology and Strabismus (AAPOS) website here… 
  • Link: ROP page on the American Academy of Ophthalmology website here… 
  • Link: 10 Tips from the Parenting Trenches — Shared Advice from Parents of Visually Impaired Children — from the reSources Newsletter here… 
  • Link: Medline Plus information on ROP from the U.S. National Library of Medicine here… 
Usher Syndrome
 

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