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Childhood Visual Impairments and Their Family Support Groups – BLaST Intermediate Unit 17

Childhood Visual Impairments and Their Family Support Groups

Albinism

diagnosisInformation

http://www.nlm.nih.gov/medlineplus/ency/article/001479.htm.

It gives an overview, prognosis, symptoms and treatments of albinism, as well as, support groups.

http://www.albinism.org/publications/index.html

Offers a list of publications on albinism in English and Spanish. Some of these publications include: (1) What is Albinism; (2) African Americans with Albinism; (3) Assisting Students with Albinism; (4) Low Vision Aids; and (5) Social Aspects of Albinism.

http://www.albinism.org/faq/children.html

This website help answers the most frequently asked questions by parents and teachers about how to help the child with albinism. Good website.

http://www.mayoclinic.com/health/albinism/DS00941/METHOD=print&DSECTION=all

Explains about the symptoms, causes, tests/diagnosis and treatments of albinism. Also, it addresses lifestyle changes, coping skills and support for those with albinism.

http://www.aapos.org/terms/conditions/12

The American Association for Pediatric Ophthalmology and Strabismus gives a brief overview of albinism and briefly explains about the causes, types, abnormal findings in the eye, treatments, optical aids and lifestyle changes associated with it. The article references, The National Organization for Albinism and Hypopigmentation (NOAH), as a place to go to get further information and assistance.

Support Group

http://www.albinism.org/aoc.html

 

Amblyopia

ambliopia (occhio pigro)Information

http://www.aapos.org/terms/conditions/21

The American Association for Pediatric Ophthalmology and Strabismus gives a summary of amblyopia and how it is treated through patching.

http://www.strabismus.org/amblyopia_lazy_eye.html

It gives a brief summary of amblyopia, its diagnosis, causes and treatments.

http://www.nei.nih.gov/health/amblyopia/

This website offers a printed publication, Facts About Amblyopia and the Spanish version, La Ambliopía. It gives results of the following research projects on amblyopia: (1) An Evaluation of Treatment of Amblyopia in Children 7 < 18 Years Old (ATS3) ; (2) Vision In Preschoolers Study (VIP Study) ; (3) A Randomized Trial Comparing Part-time Versus Minimal-time Patching for Moderate Amblyopia (Two v. Six); (4) A Randomized Trial Comparing Part-time Versus Full-time Patching for Severe Amblyopia and (5) Amblyopia Treatment Study(ATS I). Also, it offers a video about amblyopia.

 

Support Group

http://www.familyconnect.org/message_board_subjects.asp?FolderID=77

 

Charge Syndrome

Information

http://www.chargesyndrome.org/documents/NewParentPacket2010.pdf

Offers information on how different aspects of a person life are impacted by Charge Syndrome. These areas include, motor skills, speech, vision, feeding, and behavior. It also offer resources for teacher and discusses the educational needs of the child.

http://chargesyndrome.org/New%20Parent%20Packet/fact_sheet.pdf

It is an informational brochure about Charge Syndrome, it characteristics, development of children with Charge Syndrome and contact information to obtain assistance/ resources.

http://www.chargesyndrome.org/resources.asp

It offers articles, references, support groups and literature for people working with children who have Charge Syndrome.

http://support.perkins.org/site/PageServer?pagename=Webcasts_Vision_Issues_For_People_With_CHARGE_Syndrome

This series of webinars given by David Brown offer insight into the following areas: (1) ocular defects and their effects; (2) muscle tone and vision, (3) vestibular issues and vision; (4) accommodations to maximize vision; (5) behavior, and (6) recognizing compensatory behaviors. The total webinar is 20 minutes in length.

Perkins also offers Charge Syndrome: Series # 1 and #2 for professional growth credit or ARCVEP hours. These courses address the physical, learning and communication aspects of having Charge syndrome. These and other videos addressing needs of children with CHARGE can be viewed free of charge.

http://www.chargesyndrome.org/resources.asp

This is a comprehensive webpage with links to Charge Syndrome webinars, research information, a brochure abut CHARGE, ASL Sign Charge Syndrome, Management Manual for Parents and the Professional Packet for teachers and therapists. Other books, articles and family support groups are referenced.

 

Support Group

https://groups.yahoo.com/neo/groups/CHARGE/info

 

Congenital Cataracts

baby and glassesInformation

http://www.lighthouse.org/about-low-vision-blindness/childrens-vision/pediatric-eye-disorders/congenital-cataracts/

Lighthouse International gives a summary of congenital cataracts, how they affect vision, and the symptoms and treatments of them. Also, It gives links to information about other congenital eye conditions, as well as, how the eye works.

http://my.clevelandclinic.org/childrens-hospital/health-info/diseases-conditions/eyecare/hic-cataracts-in-children.aspx

This article’s primarily focuses on treatment of congenital cataracts.

Its sections include: (1) causes of congenital cataracts; (2) how congenital cataracts affect the child’s vision; (3) treatments/surgery; (4) intraocular lens implants; and (5) long-term prognosis for children who have had cataract surgery.

http://rstb.royalsocietypublishing.org/content/366/1568/1234.full

This is a research article that explores the genetic mutations which cause congenital cataracts, as well as, a thorough look at the clinical aspects of them.

 

Support Group

http://www.familyconnect.org/message_board_subjects.asp?FolderID=89

 

Coloboma

Information

http://www.nei.nih.gov/health/coloboma/index.asp

Excellent site which provides a fact sheet and research about uveal coloboma, as well as, links to other vision related websites and organizations.

http://ghr.nlm.nih.gov/condition/coloboma

An article about the genetic aspects of coloboma.

http://www.aapos.org/terms/conditions/35

This website addresses the types and problems/complications of coloboma in children.

 

Support Group

http://www.familyconnect.org/message_board_subjects.asp?FolderID=53p

 

Cortical Visual Impairment (CVI)

Information

http://www.tsbvi.edu/seehear/fall98/cortical.htm

Reprinted from Blind Babies, this link offers a summary of the characteristics of CVI and teaching strategies for younger children.

http://www.familyconnect.org/eyeconditions.asp?EyeConditionID=6

Offers information on CVI, as well as, a link to a message board.

http://wvde.state.wv.us/osp/vi/cvi/

Presents videos about the basics of CVI, assessment of CVI and training used to work with students with CVI. Also, it gives personal perspectives of students and their families.

http://www.aph.org/cvi/define.html

This gives a brief and concise look at the history, causes and characteristics of CVI.

http://www.perkins.org/resources/webcasts/cvi-and-the-evaluation-of-functional-vision.html

This is a series of five videos presented by Dr. Christine Roman, the author of “An Approach to Assessment and Intervention.” These videos discuss the characteristics of CVI, how to assess and evaluate students with CVI and intervention practices to help the child.

http://www.earlyinterventionsupport.com/cortical-visual-impairment.cvi/

This website briefly defines CVI; examines the symptoms of CVI; how it is diagnosed, its causes and helps for those with CVI. It is specifically geared to parents.

 

Support Groups

http://community.babycenter.com/groups/a3885375/cortical_visual_impairment

 

 

Deaf-Blindness

Accessibility iconsInformation

http://nfadb.org/

National Family Association for Deaf-Blind (NFADB) offers newsletters, a literacy website for parents of a child who is deaf-blind.”

https://nationaldb.org/

This site offers a number of helpful resources for persons who are deaf-blind, their families and educators.

http://literacy.nationaldb.org/

This is a webinar on literacy with accompanying resources.

https://nationaldb.org/library

Articles dealing with communication, learning and instruction, education, transition to adulthood, family and community, the sensory system and other topics.

http://documents.nationaldb.org/dbp/index.htm

Their semi-annual publication that contains articles and events related to deaf-blindness.

http://www.tsbvi.edu/materials-on-deafblindness.

Offers an array of links to materials on deaf blindness. The sections include: (1) books and pamphlets; (2) assessment tools and forms; (3) articles and handouts; (4) transition issues; (5) videotape and DVD presentations; and (6) the quarterly newsletters: See- Hear and TXSenseAbilities.

http://www.sparkle.usu.edu/about_us/

Project SPARKLE allows parents access information, training, and resources about deaf- blindness over the internet and DVD.   They can receive information in the areas of deaf-blindness, hearing, touch, vision, concept development and intervention.

http://www.sparkle.usu.edu/images/A%20Family’s%20Guide%20to%20Interveners.pdf

Some of the areas covered in this booklet include the definition and impact of deaf blindness, deaf-blind learning, intervention, educational programming and misconceptions about interveners.

http://www.pattan.net/category/Educational%20Initiatives/Deaf-Blind

Pennsylvania’s Deaf Blind Initiative “provides targeted professional development and technical assistance to parents and educators supporting infants, toddlers, and students with deaf-blindness.

http://www.seattledbsc.org/curriculum/curriculumBackground.php

A new support to the deaf-blind curriculum entitled, “Providing and Receiving Support Services: Comprehensive Training for Deaf-Blind Persons and Their Support Service Providers.” It can be downloaded.

http://www.deafblind.com/usa.html

A list of helpful organizations in the United States for persons who are deaf-blind.

 

Support Group

http://nfadb.org/how-we-help/building-connections/

The NFADB has an 800 number to call with questions, a Facebook community page, membership email listserv and the Ask a Family outreach.

 

Glaucoma

cause of blindnessInformation

http://www.nei.nih.gov/health/glaucoma/glaucoma_facts.asp

This is a good and concise fact sheet about glaucoma that includes the definition, symptoms, treatments, loss of vision, helps in obtaining more information and questions to ask the doctor.

http://glaucoma-info.com/

Gives the symptoms, causes, risk factors, types, screening, prevention, treatment and resources for obtaining more information about glaucoma. Good and informative website.

http://glaucoma.org/glaucoma/glaucoma-facts-and-stats.php

This site gives information about childhood glaucoma, its treatments, a glossary, and other useful information.

http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/eye/visglau.html

The information is specific to childhood glaucoma.

 

Support Groups

http://www.glaucoma.org/treatment/glaucoma-support-groups.php

http://www.mdjunction.com/glaucoma

 

Hyperopia (Farsightedness)

Boy Showing Glasses With Mother And Optician In StoreInformation

https://www.nei.nih.gov/health/errors/hyperopia.asp

General information about Hyperopia and a link to questions to ask the doctor.

https://catalog.nei.nih.gov/s-18-brochures-and-fact-sheets.aspx

Downloadable fact sheet about hyperopia.

http://www.nhs.uk/Conditions/Long-sightedness/Pages/Introduction.aspx

It reviews the causes, diagnosis, treatment and complications of hyperopia. It has a link to an articles about the complications.

http://www.aoa.org/patients-and-public/eye-and-vision-problems/glossary-of-eye-and-vision-conditions/hyperopia?sso=y

Description of hyperopia and a question and answer section.

http://www.lighthouse.org/eye-health/common-eye-conditions/hyperopia/

Good summary of the definition, symptoms, risk factors, diagnosis and treatment of hyperopia.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1720267/?report=classic

Research article about the relationship between hyperopia and reading. A PDF version of the full article can be obtained by clicking under Formats.

 

 

Juvenile Macular Degeneration (Stargardt’s)

Information

http://ghr.nlm.nih.gov/condition/stargardt-macular-degeneration

An article that addresses the genetics of Stargardt’s.

http://www.macular.org/stargardt-disease

Explains about Stargardt’s and has links to a fact sheet and a DVD about Stargardt’s.

http://www.eyesight.org/Macular_Degeneration/Junvenile_MD/junvenile_md.html

Delineates the different forms of Stargardt’s, prospects for treatment and prevention of it.

 

Support Group

http://www.familyconnect.org/forum/stargardts-disease-forum/1

 

Myopia (Nearsightedness)

Eyeglasses goldenInformation

https://www.nei.nih.gov/healthyeyes/myopia.asp

A brief overview of myopia.

https://catalog.nei.nih.gov/s-18-brochures-and-fact-sheets.aspx

Downloadable sheet about myopia.

http://www.rnib.org.uk/eye-health-eye-conditions-z-eye-conditions/myopia-and-high-degree-myopia

This article reviews how the eye work, classifications of myopia and treatment of it.

http://www.aoa.org/patients-and-public/eye-and-vision-problems/glossary-of-eye-and-vision-conditions/myopia?sso=y

Good article that addresses the causes of myopia and how it is diagnosed and treated. It also goes over some myths associated with myopia.

 

 

Nystagmus

Information

nystagmus.org/new/links.php

Provide links to websites that provide information about nystagmus, teacher/parent educational materials, low vision links, other nystagmus-related sites, and professional organizations.

http://www.aoa.org/x9763.xml

The American Optometric Association gives a summary of nystagmus, its causes and how it is diagnosed and treated.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0003528/

Good article for parents that gives summary of nystagmus, its causes, types of nystagmus, questions to ask doctors and what to expect from them.

http://www.nystagmus.org/aboutn.html

It offers a brief and informative overview of nystagmus.

http://www.rnib.org.uk/eyehealth/eyeconditions/eyeconditionsdn/Pages/nystagmus.aspx

The Royal Institute for Blind People discusses in length about the types, causes, testing and treatments of nystagmus. Also, it explains how the eye works and moves, the null point, measuring vision, low vision aids and how to cope with having nystagmus.

http://www.earlyinterventionsupport.com/diagnosis/List/Nystagmus.aspx

This website help parents of infants and preschool age children to understand nystagmus and the recommended accommodations to be shared with the child’s teacher.

 

Support Groups

http://nystagmus.org/list.html

http://www.familyconnect.org/message_board_subjects.asp?FolderID=69

http://www.mdjunction.com/nystagmus

 

 

Optic Nerve Hypoplasia (ONH)

Information

http://www.onhconsulting.com/news.php?viewStory=3

This article gives an explanation of ONH, its major characteristics, how to help a child with OHN lead a meaningful life, and educational resources.

tsbvi.edu/seehear/spring99/opticnerve.htm

Reprinted from Blind Babies, The Optic Nerve Hypoplasia Visual Diagnosis Sheet offers an overview of ONH, as well as, teaching strategies, conditions associated with ONH and myths about it.

http://www.tsbvi.edu/seehear/summer06/onh.htm

This fact sheet is clear and concise and it is available in Spanish.

This guide for parents is about hypoplasia and other problems that can be related to having hypoplasia.

http://www.wonderbaby.org/articles/onh-and-abby

A mother’s story about raising a daughter who has ONH.

http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/496/viewFullReport

This article defines ONH, explains about its symptoms, causes, and its affected population and gives links to related organizations. This website’s organization, the National Organization for Rare Disorders (NORD provides information about numerous rare eye conditions and many helps for professionals and families.

 

Support Group

http://www.familyconnect.org/message_board_subjects.asp?FolderID=64

 

Retinopathy of Prematurity

Information

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002585

Offers information on the causes, incidence, risk factors, the symptom, testing, prognosis and complications of ROP.

http://www.nei.nih.gov/health/rop/rop.asp

Excellent resource. It delineates the causes, treatment, risk factors, resources for persons with ROP and answers frequently asked questions about ROP.

http://www.ropard.org/

It offers informational articles on pediatric ROP, good bibliographies for children and adults, an extensive list of links to catalogs for toys and educational resources, a brochure and practical suggestions for parents and other pertinent information. It is an excellent resource for all persons interested in learning more about ROP and desiring to help the children.

http://www.tsbvi.edu/resources/1378-retinopathy-of-prematurity

It examines ROP, its stages and treatments.

http://www.retinaeye.com/retinopathyrrematurity.html

This website gives a summary of ROP, addresses the risk factors associated with ROP, the classification of ROP and how the doctor will determine the extent of the ROP. Good detailed article.

 

Support Groups

http://www.familyconnect.org/forum/retinopathy-of-prematurity-forum/1

http://www.theropfoundation.org/

A website developed by parents of children with ROP. Persons can voice their comments or concerns on their Facebook page at http://www.facebook.com/pages/The-Retinopathy-of-Prematurity-Foundation/175787593248

 

Retinitis Pigmentosa (RP)

focusInformation

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002024/

This offers information on the causes, incidence, risk factors and the symptoms, testing, prognosis and complications of RP.

http://www.geteyesmart.org/eyesmart/diseases/retinitis-pigmentosa.cfm

This article gives a good explanations of the definition of RP, its causes, symptoms, diagnosis and treatment.

http://www.aoa.org/patients-and-public/eye-and-vision-problems/glossary-of-eye-and-vision-conditions/retinitis-pigmentosa?sso=y

Gives a brief summation of retinitis pigmentosa.

http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/21/viewFullReport

Excellent summary of RP.

 

Support Group

http://www.familyconnect.org/message_board_subjects.asp?FolderID=65

 

Strabismus

Kleiner RapperInformation

http://www.lighthouse.org/about-low-vision-blindness/childrens-vision/pediatric-eye-disorders/strabismus/

It briefly describes the types, symptoms, risks and treatment of strabismus.

http://www.strabismus.org/

This article defines strabismus and explains about its types, causes, treatments and surgery.

http://www.aoa.org/patients-and-public/eye-and-vision-problems/glossary-of-eye-and-vision-conditions/strabismus?sso=y

It explains about what causes strabismus and how it is diagnosed and treated. It helps the parents to understand about surgery and what to expect and how to care for their child after the surgery.

 

Support Groups

https://groups.yahoo.com/neo/groups/EyesApart/info

http://www.familyconnect.org/forumhttp://www.familyconnect.org/forum