Living with Stargardt Disease

You can live well with Stargardt disease

As Stargardt disease progresses and affects your vision over time, know that you can make adaptations, find community, and empower yourself throughout your journey so that you can do almost anything.

“Stargardt is progressive. That means you know that things are going to get challenging, but with the right mindset you will be able to overcome adversity.”

-Charlie C., motivational speaker and Stargardt patient

Stargardt Fact Sheets to Share and Print

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To live successfully with low vision, maximize the vision you have.

Low vision specialists are trained to help a patient with vision loss learn how to use their remaining vision to its fullest potential. Find a vision rehabilitation center so you can learn how to maximize the use of the vision do have to help you work, do daily activities, and do the things you enjoy. This can include:

Improved lighting techniques, such as adding extra lighting for activities like reading, making meals, or other close work.
Use of accessible technology, such as smart phones, tablets, VR, computers, smart homes.
Use of low-tech solutions, such as magnifiers or simple home modifications.
Find a vision rehabilitation center near you.

This resource is made possible with funding from:

Alkeus Pharmaceuticals

YourNorthStarg.com

Online resources for persons with vision loss

Living Well with Low Vision offers resources and help finding low vision clinics near you and clinical trials for individuals with vision loss

The Blind Life website and YouTube channel provide videos, tips, and insight for those living with vision loss.

Thriving Blind Academy is dedicated to promoting literacy, employment and financial awareness in the blind community. Free and paid programs are available for people of all ages.

Hadley offers practical help, connection and support free of charge to anyone with a visual impairment, their families and professionals supporting them.

Guide Dogs of America – many patients with Stargardt disease and vision loss benefit from use of a guide dog. A guide dog is a specially trained service animal that helps an individual with vision loss or blindness.

Participate in a support group for patients with Stargardt disease or connect to an online community.

Global Genes

MD Support

Eye2Eye is a free, phone-based, peer support program, designed to assist adults who are blind or visually impaired and their families.

Talk to your loved ones.

Talk about how you are feeling and describe how you see. It will help your family and friends understand what you can and cannot see as they are part of this journey with you. Share with them how they can help you with your vision loss and the support needed from schools and employers. Talk to them about your emotions about your change in eyesight and how you can manage together, and keep having this conversation as vision needs change.

Connect with a local organization.

There are community organizations that provides services and support for people who have vision loss or are blind. Every state has a department of rehabilitation supported by the National Council of State Agencies for the Blind.

Support services include:

vocational rehabilitation (including job retraining)
mobility training
evaluation for assistive technology devices
individualized counseling.

Local support services can be found at NCSAB.org or VisionServeAlliance.org.

A variety of organizations supporting individuals with an IRD can be found at ASharedVision.org.

Complete genetic testing.

This provides your eye care team with the most detailed diagnosis and allows them to recommend the best possible treatment for your specific IRD. Genetic testing is also often a requirement before a patient can participate in clinical trials.

Learn more about IRDs and benefits of genetic testing.

Find a provider to help you access genetic testing.

The Foundation Fighting Blindness’s list of Retina Doctors makes it easy to find a genetic testing specialist or health care provider in your area of the United States who can discuss your testing options and assist you in learning more about your IRD.

Stay up to date on clinical trials.

ClinicalTrials.gov is an online directory of clinical research studies. Search studies in the U.S. that are currently active or recruiting people aged birth to 65+ who have Stargardt disease.

Learn about clinical trials for Stargardt disease at Foundation Fighting Blindness.

When considering a clinical trial, talk to your eye doctor. Consider the following advice from the Federal Trade Commission when looking at a clinical trial.

Never participate in a study that asks you to pay to be in their study or to learn about their study.
Never participate in a study that asks for your Social Security number, bank account, or credit card during recruitment or screening.
Do an online search before you join any study. Search using the name of the clinical trial and the words “scam,” “review,” or “complaint.”

Participate in patient data registries such as My Retina Tracker

The My Retina Tracker Registry is a research database of people and families affected by IRDs. The registry is designed to share deidentified (i.e. non-traceable to any one individual) information within the IRD research and clinical communities about people with an IRD to help speed up the discovery of therapies and cures. The registry helps to connect patients with clinical research. There is no charge for the use of this service.

Advocate for yourself!

Stargardt disease is not common. It can be normal for healthcare providers not to be familiar with it. Stay informed of your condition, talk to your doctor, and share resources.

Here are some ways to advocate for your health.

Understand your condition.

Make sure you understand what your doctor shares with you. Restate to your doctor the information you have learned.

Pick a doctor you trust and are comfortable with.

If you are not comfortable with your doctor, do not be afraid to get a second opinion or change doctors.

Read reliable information.

Read trusted information from trusted resources.

Receive equitable care.

Make sure you are getting fair care and if you are not, say something.

Share your experience to help improve policy.

Share your health experiences with your state and federal senators and representative to advocate on your behalf for the healthcare you need. Learn more about advocating for vision and eye health at Advocacy.PreventBlindness.org.

How can Stargardt disease affect mental health?

Stargardt disease can cause loss of vision. For some, loss of vision can lead to feelings of depression, anxiety, and loss of independence. Not everyone who has vision loss will experience depression or anxiety. Some individuals may notice a change in their desire to socialize with others, or increased frustration with the additional time it may take to accomplish tasks of daily living. If you do experience any of these symptoms, know there is help available.

If you are in crisis, please seek help immediately.

Call or text 988 or chat 988lifeline.org.

To help support your mental health as you deal with Stargardt disease:

Talk to your primary care doctor, mental health professional, or eye doctor.

Talk to your doctor about any changes to your emotional wellbeing. Ask your eye doctor questions on how Stargardt disease will affect your daily life and work. Seek assistance on how to deal with the changes in your life due to Stargardt disease.

Seek support.

Look for support groups of others who are experiencing Stargardt disease. MD Support provides a list of support
groups near you on their website. These groups can help you learn about your condition, share your experience, and find support.

Connect with others and the things that bring you joy.

Stay connected with friends and family to keep you from feeling isolated. Over time, you can find new ways to do the things you love or to discover new hobbies that bring you happiness.

Exercise

Staying active can help symptoms of depression or anxiety and make you feel better. Talk to your health care professional to determine what exercise routine may work best for you, especially if you have changes to your vision due to Stargardt disease.