Share with others! EyeMelanoma.org quickly gets you to the info & resources you need.
Share with others! EyeMelanoma.org quickly gets you to the info & resources you need.
If you are experiencing any kind of vision impairment from radiation treatment of your ocular melanoma tumor or from enucleation (surgical eye removal), low vision rehabilitation services and other types of support are available.
On this page, you will find vision-related support for all ocular melanoma patients in the first three sections:
Additional sections cover the following:
For ocular melanoma patients undergoing RADIATION of their tumor:
For ocular melanoma patients undergoing surgical EYE REMOVAL:
"Smartphone Apps and Resources for People with Vision Loss"
This guide from SeniorLiving.org "explores a wealth of features and apps: Built-in Apple Accessibility, Built-in Android Accessibility, Standalone Apps for People with Poor Vision, and Smart Home Devices."
"Accessibility Support Phone Lines You Should Know"
OphthalmicEdge.org provides a list to get you started, explaining that "numerous companies now offer specialized support services for customers with vision loss. They are there to help you get the most out of their products." Similar companies may also offer this assistance.
From A Cure In Sight conferences:
Also: "Managing Activities of Daily Living with Low Vision" (Cori Layton, occupational therapist; 2020 Ocular Melanoma Support Alliance meeting; 55 minutes)
Search this directory for "agencies and independent service providers offering low vision services." The link below is pre-set for 'LOW VISION SERVICES.' Just select your U.S. state or Canadian province in drop-down menu. Database provided by APHConnectCenter.org' VisionAware.
Search this directory for "periodic meetings that provide participants with the opportunity to share information and talk about common experiences for mutual support, usually run by a facilitator or a professional who can provide guidance." The link below is pre-set for 'SUPPORT GROUPS.' Just select your U.S. state or Canadian province in drop-down menu. Database provided by APHConnectCenter.org VisionAware.
APHConnectCenter.org notes on its homepage that it also provides an Information and Referral Helpline as part of its VisionAware Services. "If you are looking for resources and services, one of our experienced representatives can provide free information on virtually any topic related to blindness and low vision. Call toll-free (800) 232-5463 Monday through Friday, 8 a.m. – 8 p.m. Eastern Standard Time."
Visual hallucinations can be a POSSIBLE response to vision loss after ocular melanoma treatment. This section is provided so that you know what is happening if it occurs. Always report any changes in vision to your doctors.
CBS could occur due to radiation treatment of an eye tumor or after removal of an eye.
Video: "About CBS" (Low-vision specialist Rhiannon Verran; AMI Accessible Media; July 2021, 5 minutes)
Articles: "CBS Associated with Unilateral Vision Loss: A New Diagnostic Perspective" (Ophthalmic and Physiological Optics, March 2025) and "What Is Charles Bonnet Syndrome?" (American Academy of Ophthalmology, Oct. 2024)
"Understanding Charles Bonnet Syndrome" Patient Guide
"Charles Bonnet syndrome (CBS) causes people with sight loss to see images that aren’t there. Medically, these are known as hallucinations. They are caused by sight loss and are not a sign that you have a mental health problem. The types of hallucinations people with CBS may experience fall into two main areas: 1) simple repeated patterns or shapes, such as grids, brickwork patterns, or colors; and 2) complex hallucinations of objects, such as people and landscapes. CBS hallucinations are silent and do not involve any of the other senses." (Patient Guide produced by RNIB.org and The Royal College of Ophthalmologists; June 2024)
Non-Profit Organizations Focused Specifically on CBS: Charles Bonnet Syndrome Foundation (Australia); Esme's Umbrella (UK); and Mary Carmel's Light (US)
"The Charles Bonnet Syndrome Podcast"
Hosted by patient advocate Shaimond Foye.
"Charles Bonnet Syndrome Online Support Group" — Every Saturday; No Cost (US)
(Group led by psychologist Gary Cusick. 65-minute interview of Dr. Cusick about CBS on The CBS Podcast, Dec. 2023.)
CNIB Foundation's Online "CBS Peer Support Group" — Monthly; No Cost (Canada)
(Dr. Guy Negretti; Oct.. 2024 Ocular Melanoma UK Conference; 25 minutes)
• "Ocular Melanoma Eye Cancer & Radiation Retinopathy: Game-Changing Treatments"
(Dr. Amy Schefler; Nov. 2024 presentation hosted by A Cure In Sight; 20 minutes)
• "What to Expect After Radiation for Uveal Melanoma"
(Dr. Ivana Kim; May 2024 CURE OM Symposium; 40-minute video BEGINS AT 1:58:00 TIME STAMP)
• "Radiation Basics: 1) Radiation Retinopathy; 2) What Is Radiation and How Does It Work"
(Dr. Chris Bowen and Dr. Jonathan Chen; Sept. 2023 A Cure In Sight Conference; 60 minutes)
• Dr. Tara McCannel discusses "Side Effects of Ocular Radiation Treatment," "What is Radiation Retinopathy?," "How Do You Treat Radiation Retinopathy?," "White Lights & Flashing After Ocular Melanoma Treatment," and "Living with Decreased Vision After Ocular Melanoma [Radiation] Treatment." In addition to these episodes, there are more topics about radiation treatments and post-radiation issues at her Finding Your Way with Ocular Melanoma Podcast (10–30 minutes; episodes in 2024 and 2025).
"All About Enucleation [Due to Ocular Melanoma]" (March 2024; 20 minutes) and "How to Stay Engaged with Ocular Melanoma [Monitoring] After Enucleation" (Feb. 2025; 10 minutes) (Dr. Tara McCannel, Finding Your Way with Ocular Melanoma Podcast episodes)
"Understanding Prosthetic Eye Side Effects After Enucleation for Ocular Melanoma"
(Dr. Lisa Mihora and Ocularist Starla Allen; Oct. 2024 A Cure In Sight conference; 45-minute video)
Ocular Melanoma Foundation's Prosthetic Assistance Program "has provided many grants for individuals [in the U.S.] with evidence of financial hardship for OM-related, doctor-prescribed ocular and facial prosthetics."
Click on these Facebook links for each group's information on joining.
Support group created in 2007.
Support group created in 2008.
"One Eye Fun And Support Group"
Support group created in 2014.
"Ocularists are professionals specializing in the fabricating and fitting of custom-made ocular prosthetics (artificial eyes)."
American Society of Ocularists provides a list of Ocularists in the USA and other countries.
National Examining Board of Ocularists provides a list of all board-certified Ocularists in the USA and other countries.
"Anaplastologists are specialists in the design and fabrication of realistic and functional facial, body, and ocular prostheses."
Board for Certification in Clinical Anaplastology provides a list of all board-certified Clinical Anaplastologists in the USA.
International Anaplastology Association provides a list of anaplastologists in the USA and other countries.
"Introduction to Artificial Eyes"
(Ocularist Angela Reinhardt; April 2025 CURE OM Symposium; 25-minute video)
"Artificial Eyes in the Rehabilitation of Ocular Melanoma Patients"
(Ocularist Jenny Geelen; June 2024 AOMA Summit; 20-minute video)
"Ocular Prosthetics 101: Design and Care"
(Ocularists Todd and Tawnya Cranmore; Sept. 2023 A Cure in Sight Conference; 65-minute video)
(Ocularist Starla Hadlock-Allen; June 2023 A Cure in Sight interview; 55-minute video)
Also: Recent Innovation Under Development — "Automatic Data-Driven Design and 3D Printing of Custom Ocular Prostheses"
(Reinhard, Urban, Bell, et al. Nature Communications, Feb. 2024 journal article)
New information added to this webpage: May 9, 2025
Links to all external sites re-verified on this webpage: April 21, 2025
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