Events for November 2022

Frequently Asked Questions

Is there a cure or treatment available?

Currently, there is no cure or treatment available for CRB1 related retinal disease. The Curing Retinal Blindness Foundation has been collaborating with researchers, institutions, and funders to push research for CRB1 forward and cast a wide net of options for treatments. Through our advocacy, fundraising, networking and contributions to the field, we are a leader in the retinal research space and have created a very hopeful future for those living with CRB1 LCA/RP. Financial contributions will give us the opportunity to continue our great work.

What are the retinal diseases associated with CRB1 gene mutation?

Leber Congenital Amaurosis – this has the earliest age of onset and in most cases the most severe vision loss from an early age. Retinitis Pigmentosa – Usually not diagnosed until child is older but can be diagnosed at a younger age, progression of vision loss tends to be much slower. Mostly affects the peripheral vision and has a tendency for night blindness.

Cone Rod Dystrophy – Degenerative retinal disease like the other two, leads to vision loss.

Are there other health issues I should be worried about?

For the most part, the answer is no. But there are a few things you should watch out for:

Eye rubbing or oculo-digital reflex. This is a tendency for very young children to use their fists to press on their eyes which can lead to a sunken appearance of the eyes after a period of time. The best defense for this is to simply keep watch for this behavior and distract your child to keep them from doing it.

Roving eye or nystagmus. This condition causes involuntary eye movement making it hard to focus.

Sensitivity to bright light. If you notice your child squinting or covering their eyes in bright light or sunny areas, may want to consider having them wear sunglasses when outside in the sun or transition lenses if they wear glasses. The proper sunglasses can also help protect the retina.

Night Blindness – difficulty seeing in dim or low lit areas. Even if your child’s vision is fairly good they may experience more difficulty in lower lit areas, especially when coming from a well lit or sunny area.

Vision Loss – these diseases are progressive so it is important to continue to have your child’s vision checked on a regular basis to monitor their vision. It may be necessary to update lenses if they are prescribed glasses to keep their corrected vision the best it can be. Once your child is old enough, it is a good idea to test their field of vision as well as acuity.

What kind of visual aids are available for my child and where do I get them?

There are so many great vision loss aids out there for all age levels, so much more then even just a few years ago. Please visit our Tools of the Blind/VI page of our website to see what is available for you and your child.

What kind of a future can I expect for my child?

With so many visual aids available for our children there is no reason not to think that our children can grow up with the same opportunities as every other child and exceed in anything that they wish to do. Please visit these links to see some of the accomplishments of the amazing children in our group. Not only are our children amazing but we have also included a few links to some other wonderful stories that show just what your child can be capable of!!

For more useful information or to get in touch use the links below.

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