My child has just been diagnosed with Aniridia, what should I do?
The first, best thing to do is to get informed. The strongest advocate for a child reads information about aniridia on credible websites and using well-researched resources. Peer support is a must: many websites and support groups online can connect parents of children with aniridia in order to share their experiences and insights.
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How is someone's vision affected by Aniridia?
How much someone's vision is affected by aniridia depends on several factors. Lacking an iris does not cause blindness by itself, but rather depends on the extent of the disease and the exact parts of the eye affected. Predicting if a baby will lose vision in the future is difficult because ocular complications may occur in the future from the disease that may reduce someone's functional vision. Some of the symptoms of aniridia such as nystagmus (repetitive involuntary eye movements) or recurrent glaucoma and cataract can reduce someone's visual functioning.
Can I wear contact lenses if I have Aniridia?
Depending on the extent of disease, some individuals with aniridia may be good candidates for special types of contacts that may help improve vision as well as reduce glare. It can also have a cosmetic benefit.
How often do I have to go to my eye doctor when I have Aniridia?
People with aniridia need regular eye exams to prevent and promptly treat the different symptoms of aniridia. The frequency of these visits will vary depending on what an ophthalmologist decides and those eye problems a patient has.
Will my child's development be affected by Aniridia?
Most children with isolated aniridia develop on pace with their peers, but a primary care provider should still track their development and make any necessary referrals.
Will my child's schooling be affected by Aniridia?
Children with aniridia can attend regular public schools, but it is important to alert the school's visual impairment team to provide support for the child. Resources for early intervention at both school and home can also be very important.
How can I help my child who has Aniridia with photophobia?
Photophobia is an issue for many with aniridia; they can be highly light-sensitive and feel pain or discomfort in bright lighting. Adults tend to protect themselves by squinting or avoiding certain lights, but children may need encouragement to wear hats or sunglasses. Also be sure to position children away from window light in their highchairs or car seats.
If my child or I have photophobia and, does that mean we cannot go outside?
Patients with photophobia are able to go anywhere they feel comfortable with proper protection, using appropriate sunglasses or hats.
Can glasses help my child's vision if they have Aniridia?
Glasses can help patients with aniridia, but not completely. Glasses can improve vision and correct abnormalities with the lenses of the eye, correcting farsightedness or nearsightedness. They cannot, however, correct abnormalities with other structures of the eye that reduce vision, particularly the fovea.
How do I know if I need to take my child to an Optometrist vs. an Ophthalmologist if they have Aniridia?
An optometrist and an ophthalmologist have different educational backgrounds. An ophthalmologist is a medical doctor who has gone to medical school and specializes in medical and surgical care of the eye. She can perform surgeries, prescribe eyeglasses, and treat any eye diseases. An optometrist is a doctor who went to optometry school, not medical school. An optometrist can also prescribe eyeglasses and drugs that treat eye diseases, but cannot perform surgery. An optometrist can, however, provide pre- and post-surgery care. A primary care doctor can refer patients with aniridia to right type of health care, and an optometrist can also make a referral to an ophthalmologist if needed.
It is hard for me to give my infant child with Aniridia eye drops, what is the best way to do this?
Instilling eye drops in infants with or without aniridia can be challenging, but there are ways to achieve this with minimal fuss. A good technique involves wrapping an infant in a blanket to secure her arms and legs, and lying her on her back with her head is between one's knees to prevent movement. One can either place a drop at the corner of the child's eye and wait until it settles in the eye when she opens he eyelid, or gently pull down her lower eyelid to create a small pouch for the drop.
Do I need to stimulate my child's vision if they have Aniridia?
Babies with aniridia require visual stimulation in the first few months of life. A caregiver should stimulate a child's vision by surrounding her with colorful, visually interesting things. One can make the areas around her crib, her toys and the family's clothes black, white, and primary colors for high contrast. Once a child has begun vision therapy, a therapist may also recommend activities to stimulate the child's vision.
How can I get professional services for my child with Aniridia?
To obtain "Early Intervention Services" for a child with aniridia one needs to find the agency that corresponds to one's home state. Visiting the National Dissemination Center for Children with Disabilities' website provides information compiled for each state. Even if a child's development is on track, these agencies can provide evaluations and important needed services.
What is nystagmus and is it seen in patients with Aniridia?
Nystagmus is comprised of irregular, involuntary eye movements. These movements are seen in individuals with aniridia and are usually more frequent when they feel upset, excited or tired.
Does my vision become worse when I have nystagmus?
Nystagmus can make it difficult for someone to focus on specific objects and see clearly. People can get used to nystagmus and find better positions for their head to reduce it.
What is a "null point" in relation to nystagmus?
A null point is a head position that provides an individual the best vision by most reducing the effects of nystagmus. To find one, vary the positions of one's head to find the area of the retina that allows for the best focus.
Aniridia is an inherited genetic disease, but both my partner and I don't have Aniridia and our child does. How is that possible?
Aniridia is most often an inherited genetic syndrome. However, not all mutations are inherited. Sometimes a new mutation can occur very early in a pregnancy, and one calls this condition sporadic aniridia. A person with sporadic aniridia can then pass it on to her children as well.
Does my child with Aniridia need to learn how to read Braille?
People with aniridia can read text using their vision. Some choose to learn to read Braille to give their eyes some rest every now and then, or as a precaution for the future in case of a medical complication.
Do people with Aniridia need special accommodations to read books?
Whether or not a patient needs special accommodations to read text depends on the extent of the aniridia. Some individuals may require larger text than usual, magnifiers or high contrast materials. These have now become easier to find with gadgets as e-readers and tablets.
Can I drive a car if I have Aniridia?
The ability to drive depends on the extent of the aniridia, and different states and countries have different requirements for drivers. It may be necessary to wear special device known as bioptic in order to drive.
Are there any specific recommendations for sunglasses or hats for people with Aniridia?
Many with aniridia have expressed preference for 'Julbo' brand sunglasses, specifically the "looping brand" for their practicality and a feature that blocks out light from the sides. The Vision for Tomorrow Foundation has recommended the brand 'Sunday Afternoons' for having quality lightweight hats.