Fabry Family Weekend Camp
Fabry Family Weekend Camp
Our camp is usually in September at Victory Junction in Randleman, NC.
We Need to Recognize and Rescue Everyone
We Need to Recognize and Rescue Everyone
Please participate in our Fabry disease education and awareness initiatives.
Welcome to Our Mothership!
Welcome to Our Mothership!
Our website remains at the center of our education and outreach programs.
Patient Reported Outcomes (PROs) Program
Patient Reported Outcomes (PROs) Program
We are learning from the PROs (individuals with Fabry disease)!
Did You Know?
Did You Know?
The NFDF provides many Fabry community programs?
In Their Honor
In Their Honor
Our community is full of strength, courage, contribution, and hope.
The International Fabry Community
The International Fabry Community
Our fight with Fabry Disease does not have geographic boundaries.

Cornea Opacity Cornea Opacity Cornea Opacity

Corneal opacity photos courtesy of Nasi Samiy, MD, Retina Institute of the Carolinas.

A common sign of Fabry disease, and one that often leads to an earlier diagnosis than other Fabry disease symptoms are pale gray, brownish or yellowish streaks in the cornea of the eye. These are commonly referred to as corneal opacities and technically referred to as corneal verticillata. In some individuals, the pattern is an overall hazy pattern rather than streaks or it begins with a haze and develops into streaks.

This pattern has been reported to be present in over 90% of Fabry disease patients and is evident in a mild form in the majority of children with Fabry disease. The streaked pattern is most prominent in females who carry the Fabry gene.

The corneal haze or streaks very rarely, if ever, cause impaired vision. Individuals with Fabry disease are also susceptible to Fabry cataracts (opacities on the lens) but this occurrence is rarer than corneal opacities. These cataracts also do not usually impair vision or require removal. Other common eye findings include small blood-filled sacs in the outer layer of the eye (conjunctival saccular aneurysms), irregular and tortured (twisted and crooked) retinal veins and blood vessels.

Corneal opacities can be seen by a routine slit lamp examination by an optometrist or ophthalmologist. If corneal opacities are observed, an individual should contact the NFDF for assistance with being evaluated for Fabry disease.

Also, when individuals, especially females with near normal levels of enzyme exhibit other symptoms of Fabry disease, a slit lamp examination may be done to help determine the likelihood of a positive Fabry disease diagnosis before proceeding with expensive DNA testing.

Since early diagnosis means early treatment, optometrists and ophthalmologists can play a critical role in helping individuals with Fabry disease through recognition of corneal opacities. Through early diagnosis, children may have an opportunity to avoid most of the symptoms that adversely affect their quality of life and may later avoid the life-threatening effects of this disease.

The medication Amiodarone (Cordarone) can cause an eye finding similar to Fabry disease corneal whorling which may be mistaken for Fabry disease.

Note: The primary source of this information is the September 2006 Genetics in Medicine journal article entitled "Fabry disease: Guidelines for the evaluation and management of multi-organ system involvement."

 

The NFDF's "The Eyes Have It Campaign." For the Fabry community, by the Fabry community.

Become a volunteer!

If you have Fabry disease you may have corneal whorling, and you can help with critical Fabry disease education efforts.

The NFDF has begun a national campaign to provide Ophthalmologists and Optometrists an opportunity to see cornel whorling and Fabry cataracts in person. We believe that seeing the Fabry disease eye symptom in person will help eye doctors recognize Fabry disease in others.

Fabry disease remains unrecognized and undiagnosed in thousands of people in the U.S. and around the world. These people should have an opportunity to be recognized, diagnosed and treated in time to avoid a diminished quality of life and a shortened life-span.

Please help by becoming an NFDF volunteer to exhibit your corneal whorls in an educational setting at your local eye clinics. First, print the clinic visit checklist from the link in the documents section below to make your participation as easy and beneficial as possible. Then, print the letter located below and take it to your local eye doctors/clinics. Offer an immediate viewing or schedule an event with the clinic(s) and email This email address is being protected from spambots. You need JavaScript enabled to view it.to notify us of your participation.

You have a great opportunity along with other volunteers around the country to help other people be recognized and fight against their Fabry disease. Your selfless service will provide immeasurable benefit to the families you help to be diagnosed.

Thank you for your support. Please contact me for additional information.

Sincerely, Jerry Walter

Fabry Community Announcements

WHY EARLY DIAGNOSIS AND TREATMENT ARE SO IMPORTANT!

Thanks for your support!

As an IRS 501(c)(3) non-profit charitable organization we rely on donations from organizations and individuals to provide meaningful programs and services to people/families with Fabry disease.                      Please give generously!  

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Thank you to our corporate/business sponsors as well as our many individual donors. Contributions of all sizes add up to make a tremendous difference.

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Frequently Asked Questions

Founder's
Corner

We continue to make great progress on finding new ways and improving current ways to support our community. We hope our efforts contribute to making your lives better! Founder and President, Jerry Walter

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Join the Fight
We need you!

Join the fight against Fabry disease! Make your voice count to create positive change for people with Fabry disease and our families. One important way to help is to take our surveys for everyone's benefit. 

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Our
Supporters

our supporters

We are very grateful for the generous contributions of our corporate, organization, business and individual donors who all make our programs possible. Every size donation matters. 

Supporters

Two Support
Organizations

fsig

The Fabry community is fortunate to have two complimentary support organizations providing a diverse set of programs and services. Join the Fabry Support & Information Group also.

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Featured Programs

Featured Resources