A blog about having a child with PHPV or PFVS

A blog about having a child with PHPV or PFVS



Persistent Hyperplastic Primary Vitreous

also known as

Persistent Fetal Vasculature Syndrome

and micropthalmia (small eye)

Our experiences with 3 surgeries, 2 EUA's, patching, contact lenses, scleral shells, prosthetic eyes, emotions, places to get support, links to other sites and general info on vision impairment. I really hope my blog helps and educates and I would love to hear from you with any questions you have, or even if you just need to talk to someone who has "been there, done that".

traciereinikka@hotmail.com

Perth, Western Australia







Monday, October 18, 2010

Support websites for parents

I haven't posted these websites in a while, so to save any new people to the blog having to search through, here they are.

http://www.facebook.com/#!/group.php?gid=58073768937

http://health.groups.yahoo.com/group/phpv/


http://www.losteye.com/

http://www.visionaustralia.org.au/info.aspx?page=1510

Micropthalmia

http://www.maparentsupport.com/

http://www.facebook.com/group.php?gid=123750425284

http://supportgroups.ning.com/ ---> search for micropthalmia


and I have a new picture of PHPV eye:

http://www.mrcophth.com/opticdisccases/phpv.html

Contact lens help, patching, shells, conformers etc General info:

http://health.groups.yahoo.com/group/aphakic/

http://www.allaboutvision.com/conditions/
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