Coats' Disease Resources - Home

News

October, 2007 - Our postings were not getting updated in September, but now the forum is up and running. Our apologies.

Introduction

This site is a free resource for those affected by Coats' Disease.

Coats' disease is a rare eye disease that is not well known outside of the medical community. Information that is available tends to be directed towards medical experts, causing confusion, frustration and even unnecessary heartbreak for those of us trying to deal with Coats' disease in our own lives.

Our son was diagnosed with Coats' disease in 2001, when he was 3 1/2 years old. Like many parents, we immediately began an intense search for the best doctors, and for useful information. Now, after two surgeries and a few years, we look back and realize how much easier our struggle would have been, if we had known then what we know now.

Our goals are...

• To provide emotional support and encouragement.
• To be a source of information; we can help others with research of Coats', provide references to research papers, phone numbers of clinics, and provide names of researchers and clinicians.
• To encourage patients and family members to seek additional information from their physician, other physicians, other patients, and published material.
• To encourage patients and family members to learn all that they can about their disease, and help them find answers to their questions.
• To encourage them to not be intimidated by their physician, medical terminology, scientific descriptions, or the doctor-patient relationship.

Disclaimer

We are not experts on Coats' disease, or in communication with anyone in the medical community, so all information in this web site should be treated with caution. This site should be used in addition to, and not instead of, other sites.

This site should not be used to diagnose Coats' disease, since only a qualified doctor who is familiar with this disease should perform such a diagnosis. Doctors who are unfamiliar with Coats' may find the information at the Orphanet website useful.

Links from this site to other sites do not imply endorsement by, nor association with, the other site. Links will be removed if requested.