Medical Information and Links

 

 

 

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Beginning in May of 2007, Genentech started recruiting patients over the age of 18 for a clinical trial that will test Lucentis for the treatment of Coats' Disease. Please see the link below:

http://www.clinicaltrials.gov/ct/show/NCT00470977?order=1

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Useful Links

Immediately after we learned that our son may have Retinoblastoma, we were sent to the Wills Eye Hospital in Philadelphia. We drove seven hours to a city we had never been to. Hotel rooms were non-existent due to a biotech convention that was in town. We finally called the Ronald McDonald house in Philadelphia, and it turned out to be an experience we will never forget. They took us in, and from the beginning, we were treated like family. There were never any questions about what we could afford to pay, or if we could pay. The volunteers were extremely gracious. We constantly got calls from the staff asking how our son was doing, and how we, the parents were holding up. We were offered counseling,  spiritual guidance, and just someone to talk to. We did not have to worry about meals, things to do for the kids, or safety. If anyone is looking for a charity to donate to, or volunteer at, we will always suggest Ronald McDonald House Charities. We would not have gotten through the week without their help and support. If you are interested in the amazing work they do, here is a link to the home page:

http://www.rmhc.org/rmhc/index.html

 

Maria from LensShoppers.com informed us that there is a great, interactive explanation of the human eye on their website. It is one of the best we have seen, and we thank her for allowing us to post a link here:

http://www.lensshopper.com/eye-anatomy.asp

 

 

Here is a link that shows the many ways to treat retinal detachment, common in Coats' disease.

http://www.eyemdlink.com/EyeProcedure.asp?EyeProcedureID=52

 

 

Here is a link to an excellent explanation of the physical anatomy of the retina. The site also has a section describing multiple diseases of the retina.

http://en.wikipedia.org/wiki/Retina#Retinal_anatomy

 

 

Here is a link to an excellent description of a detached retina, and the potential treatments.  The second link describes in detail the surgery Jake had that ultimately kept his retina attached.

http://www.vrmny.com/pe/rtrd.html

http://www.vrmny.com/pe/vitrectomy.html

 

Here is a link to a description of the Scleral buckle, which is one of the surgical options available for treatment of a detached retina.

http://en.wikipedia.org/wiki/Scleral_buckle

 

 


 Pub Med is a service provided by the National Library of Medicine, and was a major resource for us as we looked for information and/or treatments. This information is only intended to help you research Coats' disease and the treatment options available. We have not spoken to any of the authors, and we are not attempting to suggest a course of action for any child.

 

 

This is a link to a 10 year study of the effectiveness of photocoagulation (laser treatment) to seal the leaking blood vessels in Coats' patients.
 
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12510719&query_hl=1

 

 

This link is to a Pub Med article that talks about a benefits of using a high-density vitreous substitute in the management of advanced Coats' disease. The vitreous in our son's eye was replaced with silicon oil in Sept. of 2005
 
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11952273&query_hl=2

 


 

This is a link to a Pub Med article that talks about the urgent need for treatment once leukokoria is present. (Leukocoria is an abnormal pupillary light reflection that usually results from an intraocular abnormality. One-half of the cases of childhood leukokoria are caused by Retinoblastoma, a rare cancer of the eye.)
 
 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10420380&query_hl=4

This is a link to a Pub Med article that talks about 13 adult Coats' patients with a mean age of 50 at initial diagnosis.


 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15882905&query_hl=4

 

 

This is a link to a Pub Med article that talks about the benefits of the procedure performed twice on our son,  called a "pars plana vitrectomy".
 
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11955307&query_hl=4 

 

 

This is a link to a description of Coats' disease on Orphanet, along with some links to additional information. Parts of it get pretty technical:

http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=190

 

 

 This is a link to the Palmetto Retina Center, and a description of the surgery performed on our son:

http://www.palmettoretina.com/learn/conditions/vitrectomy.html

 

 

This link is also to the Palmetto Retina Center, and is a description of Coats' Disease. It also has a picture of the leaking blood vessels associated with Coats':

http://www.palmettoretina.com/learn/conditions/coats_disease.html

 

 

UK Links

Here are several links to helpful organizations in the UK. Thanks to a poster named karlperkins for bringing them to our attention. All of them are great sites!

 

 

Here is a link to the Royal National Institute for the Blind, a group that supports the Blind and Partially Sighted: 

 

http://www.rnib.org.uk/xpedio/groups/public/documents/PublicWebsite/public_rnib003642.hcsp

 

Here is a link for an organization called Contact a Family, that provides a method for parents to connect with other parents that are dealing with similar conditions:

 

http://www.cafamily.org.uk/medicalinformation/conditions/azlistings/c38.html

 

Here is a link to the Making Contact organization's website. There are several other Coats' Disease parents already registered here:

http://www.makingcontact.org/index.php?ci=362

 

 

 

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