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In addition to the colours found genetically, we can also pick up colours via internal toxicity. The most common eye problems associated with EB are: conjunctivitis, blepharitis, corneal erosion, and ectropion.
Conjunctivitis ] an inflammation of the conjunctiva, which is the mucous membrane lining the eyelids and covering the anterior portion of the eyeball.
Blepharitis ] an inflammation of the eyelids.  The signs are crusting at the base of the eyelashes with ulcerations at the lid margins, gritty foreign body sensation, mucous discharge and mildly red eyes. Treatment:  Proper eyelid hygiene to clean the lid margins of crust and debris is followed by application of an antibiotic ointment. Corneal Erosions or Ulcerations – The inflammation of the cornea with the formation of an ulcerated area.
Ectropion ] A condition in which the eyelids turn outward.  It occurs rarely in people with EB.
Treatment:  Eye surgery may be considered to remove scar tissue, and skin grafts may be indicated. Eye problems may occur at any age ] In infancy, teens or adult age.  Some people with EB may never have eye problems. The severity of eye involvement with EB depends on the type of EB, the degree and sensitivity of the particular person, and the various conditions to which he or she is exposed.  Complications generally are not severe and can be minimized with good eye care.
During an eye evaluation, the ophthalmologist will ask questions about any prior problems you have encountered. When examining an active infant with EB, great patience is required in order to avoid additional trauma to the eye during the exam. If eyeglasses are required for visual needs, padding the frame at the bridge of the nose and over the ears may be necessary to avoid blistering in these areas.  Wire frames with plastic lenses certainly minimize problems because they are lighter weight than frames with glass lenses. On rare occasions eye surgery may be considered to remove scar tissue.  Skin grafts may be indicated to repair ectropion, a condition in which the eyelids turn outward.
Place finger under eye and gently pull down lower lid to form a small pouch or pocket between eye and lower lid which will hold the medication. Gently squeeze the recommended number of drops or a small strip of ointment into this pouch or pocket.


Avoid touching the eye with the dropper tip.  Do not allow the tip of the container to touch your fingers, your eye or any other surface. Close the eye and move the eyeball from side to side and up and down.  This distributes the medication over the entire eye.
Wipe off any excess medication from around the eyes with a clean, dry cloth, preferably disposable. Caution: Over the counter eye drops may contain antihistamines which can reduce tear production and cause additional drying of the eye. Avoid air conditioners and heating vents, car vents and fans which blow directly on the eye. Avoid vapors and fumes from aerosol sprays such as hair spray, spray deodorant, and spray perfume.
Avoid getting shampoo in the eyes when washing hair.  Use gentle no tears type of shampoo. While sleeping, a crust may form on the eyelids causing them to stick together and making it difficult to open the eyes.  The eyes can be bathed with warm soaks to soften and cleanse these crusts away.
Always wash hands thoroughly before and after touching eyes to avoid transmission of infection. When a childs eyes are swollen closed and cannot be used for several days, it presents a challenge to be able to cope with the activities of daily living.  This is compounded in a child with EB.
Conjunctiva ] Mucous membrane that lines the inner surfaces of the eyelids and covers the anterior surface of the eyeball except for the central portion of the cornea.
Cornea ] the clear transparent portion of the eyeball which covers the pupil and serves as the window of the eyeball.
Keratoconjunctivitis ] Inflammation of both the cornea and the conjunctiva at the same time. Optometrist ] A non-physician trained and licensed to examine the eyes for the purpose of prescribing eyeglasses. Follow Silvia's journey from the stillbirth of her first son, followed by a miscarriage, and the first 18 years of her son Nicky's life with Recessive Dystrophic Epidermolysis Bullosa.
About MeMy name is Silvia and while I was born and grew up in Italy, I now live in Southern California (USA).


I started this website when Nicky was just an infant because I could not find any information about EB, so anything I came across I posted for the benefit of other parents and it grew from there.
Visual prognosis is generally good with no loss of vision and no greater need for eyeglasses than anyone else.
He has the expertise and equipment to conduct a proper and thorough eye examination and give appropriate treatment.  Your regular doctor can refer you to an ophthalmologist. Your eyes will be examined using various instruments.  Fluorescent drops or dye with an anesthetic ability may be inserted in the eye to outline any areas of erosion and to facilitate the examination. I still run this website (and its FB page) because I never stopped looking for information! The main mechanisms for vision, including the lens, the retina and the optic nerve are usually not involved.
Your vision can also be tested.  The doctor may take a culture to identify any bacteria and prescribe proper medication. It features education about Epidermolysis Bullosa, support and encouragement, tips and general information regarding advocacy and need for awareness.. While the foundation was founded to mainly support research at Stanford for a cure, they also help fund other research around the world.
Blepharitis may clear up promptly or persist for long periods.  It does not seem to follow the course of blistering elsewhere on the body.
Typical signs of corneal erosion are sudden onset of pain and photophobia in on or both eyes associated with tearing and a red eye. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa.



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