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Home | News | Links | How to Help | Contact Us | Search Uveitis: A Guide for Teachers and Parents
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GETTING STARTEDPlease share this booklet with other school staff so everyone who has contact with this student is aware of his or her abilities and needs. We have found that the parents of children with uveitis are eager to work with school staff to ensure that their children achieve maximum potential, both academically and socially. We recommend, before or soon after the school year begins, that a meeting be held with the student's parents. Go over the material in this booklet together. Make a plan. Invite any other school staff members who see your student on a regular basis. This may include the principal, PE teacher, vision specialist, and school nurse or bus driver. And, please, ask the parents to alert you to any problems that could affect the child's performance and attitude. Throughout the school year, inform parents of changes in the child's physical and emotional health, and urge them to communicate regularly with you, too. WHAT IS UVEITIS?Uveitis (U'VE-I-TIS) is a rare, serious medical condition that affects vision. Uveitis is inflammation deep inside the eye, in the middle layer of the eye that carries the blood supply to other parts of the eye. This middle layer of the eye is called the "uvea" (or uveal tract). Uveitis is like having inflammation from a burn, but inside the eye. Inflammation occurring inside the eye is a medical emergency. If not treated, vision loss will occur. If you have never heard of uveitis, you are not alone. Uveitis occurs so rarely that it is unlikely your school has had even one other student with this illness. In the United States, for example, it is estimated that 11,500 children have uveitis and that 2,250 new cases are identified every year. Despite how rare it is, uveitis is the third leading cause of preventable blindness in the developed world.  Anatomy
Uvea (u've'a) is the Latin word for grape. If you could see the uveal tract, it might remind you of a grape that has had its outer skin peeled away. The uvea is brown and round, with a "stem" formed by the optic nerve. "Itis" is the Latin suffix for inflammation. Put the two words together: uve + itis = "uveitis". The uvea surrounds the eye like a tunic (coat). The visible part of the uvea is the iris.
The
uveal tract has three main parts. The iris gives the eye its
characteristic color. It changes shape to control the amount of light
entering the eye. The ciliary body makes fluid for the inside of
the eye. The choroid is very vascular and provides the blood
supply for the eye. Inflammation affecting any of these parts of the eye
is called uveitis.
Teachers and Parents:
Pediatric Uveitis
Uveitis is the third leading cause of preventable blindness in the
developed world. Despite this, it is a rare disease.
Uveitis can develop at any age. It is found in all races and occurs worldwide. It is not
contagious.
Patients with uveitis starting before the age of 16 years represent 5%
to 10% of the all cases of uveitis.
Uveitis has an estimated prevalence of about 38 cases per 100,000
population, and an incidence of 15 cases per 100,000 population.
2,359,242 people in the world are estimated to have the disorder.
In the United States it is estimated that uveitis afflicts 109,000
people and that 43,000 new cases are diagnosed each year. It is estimated that, at any one time, about 11,500
children in the United States will have uveitis and that 2,250 new cases are identified every
year. Uveitis symptoms include pain or redness in the
eye, sensitivity to light (photophobia), blurred or diminished vision, problems with
"glare", seeing black spots (called "floaters"), and
sometimes, abnormal eye movement or alignment. Children with
uveitis are at increased risk for developing glaucoma and cataract. Some children
with
uveitis will become blind. Most children with uveitis will require years of medical
treatment in an effort to save their vision. Roughly half of the children with uveitis will not
have symptoms to warn them of disease activity. In this instance,
the uveitis is usually discovered after there has been irreversible
vision loss caused by damage to the retina or optic nerve.
Vision may fluctuate from relatively "normal" to very poor. Children
with uveitis may be able to read with little assistance one month and
then may need adaptive text the next. Or, the visual problems may be
relatively stable and predictable. Glare can be a big problem inside and
out of doors. Communication with the child's family is crucial to
understanding how your particular student is doing and what specific
adaptations will need to be implemented.
Children with uveitis whose vision impairment interferes with their
ability to do school work qualify for special education considerations
under the Individuals with Disabilities Education Act (IDEA).
(Website:
www.ed.gov/offices/OSERS/Policy/IDEA/regs.html).
Special education considerations in the United States include such
things as support for modification of assignments or the environment, or
for specialized equipment. If the child needs a special computer
screen or program, or a scribe, this could be funded under special
education.
Children with uveitis whose vision does not interfere with school
work may be eligible for accommodations under section 504 of the
American with Disabilities Act (Website:
www.hhs.gov/ocr/504.html).
Please go to the Guidelines Supplement for
links to international Special Education resources.
Because the damage caused by uveitis is inside the
eye, your student may show few outward signs of the disease. Eye
inflammation may not be noticeable except to a trained physician aided
by special medical equipment, but its effects on your student are
noticeable. It is very
important to understand that the symptoms and the limitations of your
student are quite real,
even though the disease may not be obvious to you. Your student with uveitis may not complain, so
please be alert for clues that he or she is having difficulty.
These might include symptoms such as
squinting, avoiding lights, or struggling to see written material. Your
only clue may be observing difficulty completing certain
visually
demanding tasks. Children with uveitis may try to ignore or hide changes
in their vision or other symptoms because they want to be like their
classmates. Uveitis can be caused by infection, an injury to
the eye, or by an autoimmune illness. Uveitis is not contagious.
Uveitis can exist alone, or sometimes it is a sign of other illness. For
example, about 10% of children with Juvenile Idiopathic (Rheumatoid)
Arthritis will develop eye inflammation (uveitis). Doctors will
try to figure out what is causing the child's uveitis. To do this they
will take a careful medical history, order laboratory tests and other studies that help rule out other
conditions. Sometimes the exact cause of the child's uveitis cannot be
determined. Most children who have uveitis have autoimmune uveitis. Click and read: Teachers, Parents, Students:
Uveitis
Glossary Having an autoimmune disorder means that the body
mistakenly identifies some of its own cells and tissues as foreign.
More familiar examples of autoimmune illness are arthritis and diabetes. The
immune system, which normally helps to fight off harmful, foreign
substances such as bacteria or viruses, begins to attack healthy cells
and tissues. The result is inflammation--marked by redness, heat, pain,
and swelling. Doctors do not know why the immune system goes awry in
children who develop uveitis. Scientists suspect that at least several
steps may be involved: First, something in a child's genetic makeup
gives them a tendency to develop uveitis; then contact with some
"trigger" provokes the onset of the problem. Click and read: Teachers and Parents:
Ocular Autoimmune Disease: An Introduction Doctors diagnose uveitis when they see children
with inflammation cells inside the eye during the eye examination. An
ophthalmologist (eye MD) can see the Uveitis cannot be diagnosed in the pediatrician's
office. The general ophthalmologist or pediatric
ophthalmologist will know how to diagnose uveitis. A child who is
thought to have uveitis should be referred to a
specialist for further assessment and treatment. Classroom
exercise: The special expertise of ophthalmologists with
advanced training
in Uveitis and Ocular Immunology is extremely valuable in the care of
children with uveitis. These physicians are cross-trained in immunology
and ophthalmology and are best equipped to deal with the complex
problems of children with uveitis. However, there are very few such specialists,
and most areas of the country have none at all. Children
and their families will usually have to travel a great distance just to
consult with a specialist. In such circumstances, a team approach involving
the child's ophthalmologist and a rheumatologist or chemotherapist with
experience in pediatric rheumatic disease or immunology provides optimal
care for children with uveitis. This local team works with the
consulting specialist who oversees treatment. The child will have to
travel 3-4 times a year to be examined by the specialist, and more
frequently if the disease becomes active during treatment or if vision
decreases. If you know a student with uveitis who needs help
finding specialist resources for treatment, please give the parents our
contact information. We will help them locate
specialist resources. The main goals of treatment are to preserve a high
level of vision and social functioning, and to maintain a good quality
of life. To achieve these goals, doctors recommend treatments to reduce
swelling inside the eye and to put the disease into remission. Parents
are encouraged to enroll themselves and their children in our free
support programs, or if they live a distance, to get involved with our
web-based support community. A student with uveitis will have frequent
doctor's appointments and will have to take medication. Some
children will require eye surgery. Some children will require
special eye glasses or contact lenses to aid their vision. Several years of treatment are required to put the
illness into remission. All children with uveitis will need to
take medication. Most children with uveitis have to take medications
that suppress inflammation and modify how the immune system works. These
medications may be in eye drops, given in a shot, taken by mouth (pills)
or some combinations of these treatments. Sometimes the treatment will
involve eye surgery. Children with chronic or severe forms of uveitis
will require immunosuppressive chemotherapy to protect their vision.
Children requiring chemotherapy will have days when they feel sick or
have less energy or focus. At school,
children with uveitis may need help taking scheduled medications. For
example, they may need to visit the school nurse several times a day to
take special eye drops or other medications.
Medical Appointments:
Scientists are investigating the possible causes
of uveitis. Research focuses on trying to improve existing
treatments and on finding new medicines that will work better with fewer side
effects. Click and read:
Research
at the Ocular Immunology and Uveitis Foundation
Hi Em - "Yes I think that would be a great idea to
give schools a handout about
Classroom
Exercise:
The Kids Online Club is open to any student or
class that would like to participate. Pre-registration is required to
make use of the Club's safety features. Uveitis can have a significant impact on the
child's experience at school. In this section we make recommendations
about adaptations that may assist students whose vision has been
affected by uveitis. These suggestions are equally valuable to
employ at school and in the home. These are general recommendations. An individual educational plan
will need to be developed
to
reflects the student's specific needs. Consider
implementing any adaptations prior to a period when the
child may be feeling ill. This will give the student the best chance of
continuing his or her routines under difficult circumstances. Some students
with uveitis have additional, non-vision related health problems that
may also require consideration. What you may observe in the classroomThe extent to which vision is affected by uveitis is different for each child. The complications of uveitis can be obvious, as in the case of severe vision loss, or subtle, as in the instance of a student whose vision has been preserved by treatment with immunosuppressive chemotherapy. Vision may fluctuate widely and be affected by the illness and, sometimes, but the medications used to treat it For example, eye drops make vision blurry. Students being treated with immunosuppressive chemotherapy may be fatigued or less focused cognitively on some days. Some children experience significant eye pain (photophobia) during illness flares, others do not. Children can feel unwell in a wide variety of ways during a "flare" or during certain phases of treatment. And they can feel very distressed if changes in physical appearance. Children generally adjust to all of this in some proportion to how the adults around them are handling things. But, kids have questions too. They worry, sometimes, about going blind. They get upset when the adults around them are upset. And, they worry about fitting in at school and especially about "being different". Knowing that a teacher is "tuned in" to these fluctuations and is someone to whom the student can turn is the single most valuable resource a student can have at school. Visually Demanding Tasks Many students with uveitis will have difficulty accomplishing visually demanding tasks. These are some examples of visually demanding tasks: reading, taking class notes, producing written assignments, using a computer, art projects, playing music, playing board games, looking at a chalk board or electronically projected material, going to a library, playing table games, riding a school bus, reading street signs, going on field trips, and playing baseball or other sports. I am sure that you will be able to think of many other examples at your school. The school vision specialist (or Vision Rehabilitation Center specialist) can help you determine what materials will benefit your student.
Using a ComputerStudents with impaired vision may be able to read the computer more easily if they:
For information about adjusting the appearance of text on a computer monitor for low vision users, please click here. When using a blackboard or projected material:
Dealing with GlareMany children with uveitis experience an increased sensitivity to glare. Glare can be caused by sunlight, commonly used lighting sources, and reflections from schoolroom surfaces. Reducing glare will improve the student's ability to see what is on the page or board. Common situations that produce the glare are: fluorescent lighting, having to stare into a bright light while trying to see detail; projectors, cloudy or snowy days, very bright sunshine, oncoming headlights. The adaptations listed below for reducing glare may also help the student with symptoms of photophobia (light sensitivity). Light sensitivity is a common problem that children experience, especially during times of flare, or if medications are needed to dilate the pupils. When the student is experiencing photophobia, pain can be significant and vision decreases when too much light floods the retina.
Tests, Homework, and Written AssignmentsHomework and other assignments may need to be adjusted during an illness flare so that the child's eyes can be rested
ADAPTING THE PLAYGROUNDChildren with uveitis should be
encouraged to participate in play
DO YOU HAVE QUESTIONS?We would be pleased to try to answer questions you may have about uveitis after reading this material, or to direct you to an appropriate resource. To ask a question, please point your web browser to the "Ask Dr. Foster" forum on www.Uveitis.org. Post your question. You will get a reply. ACKNOWLEDGMENTSOur online support community has a parent forum. The suggestion to develop this material was proposed there. The parent-members of the forum provided, through their online discussion, valuable insights and suggestions about content. Members of the Uveitis/OID Support Group in Boston coordinated the project and provided subject expertise (list). ADDITIONAL CONTRIBUTORSElizabeth Irvin, PhD Sharon Ray,
ScD, OTR/L Mary Anne Roberto
Em and Michelle are student-member of the Uveitis/OID Support Group. Emily Herzlin is an artist on Long Island. Uveitis Eye (back cover) Audrey Melanson is a Medical Photographer at the Massachusetts Eye and Ear Infirmary. Slit lamp photo. TIPS FOR PRINTING THIS WEB FILE
TRANSLATING THIS FILE INTO OTHER LANGUAGESWe recommend the use of professional services to translate medical and support information on this website. Non-English speaking readers may find that these free online programs are of some assistance in an initial review of this material We would appreciate learning about translations of this material that we could consider, after review, for posting on this website. If you have such material and are interested in providing it free of charge as a public service, please contact Dr. Foster for details. FOR MORE INFORMATIONABOUT UVEITISOcular Immunology and UveitisOcular Immunology and Uveitis Foundation Cambridge, MA 02142 USA Website: www.uveitis.orgNational Eye InstituteNational Institutes of Health Website: www.nei.nih.govAmerican Uveitis Societywww.uveitissociety.org/pages/index.htmlPars Planitis.orgwww.parsplanitis.orgPlease go to the Guidelines Supplement for links to international Special Education resources. VISION REHABILITATION RESOURCESPlease go to the Guidelines Supplement for links to international Special Education resources.
RESOURCES FOR YOUR STUDENTS
Please go to the Guidelines Supplement for links to international Special Education resources. ADDITIONAL RESOURCES FOR TEACHERS AND PARENTSBooksNegotiating the Special Education Maze: A Guide for Parents and Teachers. Anderson, W. , Citwood, S., & Hayden, D. (1997). Negotiating the Special Education Maze: A Guide for Parents and Teachers (3rd ed.). Bethesda, MD.: Woodbine House. (800) 843-7323 WEBChildren with Low Vision This website gives practical suggestions, appropriate for parents and teachers, for supporting the development of the child with vision challenges. It has material written in English and in Spanish about developing your child's vision, and a guide for parents of infants and young children with vision impairment. It goes through school age and the the suggestions are practical and easily implemented. Please go to the Guidelines Supplement for links to international Special Education resources. SPECIAL EDUCATIONUnited StatesIndividuals with Disabilities Education Act (IDEA) Americans with Disabilities Act, Section 504 Please go to the Guidelines Supplement for links to international Special Education resources. COPYRIGHT STATEMENTThis material is copyrighted by the Ocular Immunology and Uveitis Foundation, C. Stephen Foster, M.D., President. Readers are encouraged to redistribute this material to other individuals for noncommercial use and free of charge, provided that the text, HTML codes, and this notice remain intact and unaltered in any way. Uveitis: A Guide for Teachers and Parents may not be resold, reprinted or redistributed for commercial use or compensation of any kind without prior written permission from the author. Suggested citations are listed below. If you have any questions about permission, please contact Dr. Foster. CONTACT INFORMATIONC. Stephen Foster, M.D.President Ocular Immunology and Uveitis Foundation 5 Cambridge Center (8th Floor)
Cambridge, MA 02142 USA
SUGGESTED CITATION:WEB Edition Foster, C. Stephen. Uveitis: A Guide for Teachers and Parents. Ocular Immunology and Uveitis Foundation, Cambridge, Massachusetts USA. http://www.uveitis.org/glossary/kids/school/guidelines.htm, (Date viewed: February 09, 2007).
Print Edition Foster, C. Stephen (2004). Uveitis: A Guide for Teachers and Parents. Ocular Immunology and Uveitis Foundation, 348 Glen Road, Weston, MA. 02493, USA . Revised August 2005.
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Vision
will always be affected when there is inflammation inside the eye. How
vision will be affected depends on how severe the inflammation is, how
long the inflammation has gone uncontrolled, whether the student is
having a "flare" up of symptoms (whether the illness is active or in
remission), whether complications such as glaucoma or cataract have
developed, and what treatment the child is receiving. As you might
imagine, it can get pretty complicated. 
inflammation cells with a special
microscope called a slit lamp. Inflammation cells get into the fluids of
the eye because the surrounding structures in the eye, of the uveal
tract, have inflammation. The inflammation cells can be counted. The
cell count is one of the pieces of information the doctor uses to
determine how severe the disease is. 
"I
think it's very important for the school to be accommodating, but not in
a way that makes the student feel alienated and weird. School
(especially middle school and high school) is a scary place and it's
hard enough to feel "normal" without the addition of a strange-sounding
disease that no one's heard of. I've been pretty fortunate so far,
having understanding teachers and administrators (with the exception of
one or two). I don't mind my teachers asking how I am, just not
in front of a billion people who don't know about my disease. I had a
couple of teachers these past few years in high school who were
extremely supportive of me and they really helped me get through it.
That was extremely important because it made school a not-so-bad place
to be during that time. Maybe it even felt a little safe because I had
these teachers who were caring about me and understood if I wasn't able
to do my homework the night before. One teacher seemed like she couldn't care less and
gave me extra assignments because I had to miss an exam "...to go to an
eye doctor appointment! . . ." I had to miss the exam because I had to
go for an emergency appointment. I think that having a brochure about
uveitis that teachers can read would be a big help." ~ Em
ground
and athletic activities but must, at all times, take special precautions
to protect their eyes from injury. One parent's solution to her
daughter's refusal to wear protective eye gear during soccer was to buy
the whole team the same eye gear. Now, all of the kids want to have this
"equipment" 
This symbol indicates that the material is on another website. We have
checked the websites we link to and think they are good. But, website
content can change at any time and websites don't have to tell anyone
that they have changed. So, when leaving the Uveitis Kids Page, please
be sure to check the privacy policy of each new site you visit. If they
ask for your name or address, be sure to talk to your parents or
teacher. This is our 