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







Thursday, February 10, 2011

I've been googling...

I've found some more interesting websites for anyone who'd like to check them out:

This one has stories of micropthalmia and anopthalmia (micro is when one or both eye/s is abnormally small- as in Joel's case. Anopthalmia is the absence of eye/s)

http://www.goldbamboo.com/pictures-t3799.html

Another blog with some good links to visually disabled youtube videos

http://www.caitlyns-story.com/

Another blog - this little boy has a slight cleft lip also which just reinforces my belief that the two (PHPV and cleft lip/palate) are somehow connected. Very frustrating, makes me want to go to medical school to learn more! There's just not enough on the internet about it:


http://www.andbabymakes4.com/?p=428


Video of a vitrectomy and lensectomy in a person with PHPV (bit gory for anyone with a weak stomach)

http://www.youtube.com/watch?v=phradRutgOU

I've posted this before, it's Miss Utah who has PHPV and a prosthetic eye.

http://www.youtube.com/watch?v=3qwJ0MeTH2s

A lady who I know on facebook, her blog about her little boy:

http://williamseye.blogspot.com/

Another mum's blog, love the pictures on this one

http://jennsconstantramblings.blogspot.com/

Great informative website for the medical side of it and has some great pics of eyes:

http://www.images.missionforvisionusa.org/anatomy/2007/02/persistent-hyperplastic-primary.html

Another mum blog:

www.babydebenham.blogspot.com

This guy is a PO, specialising in retinal issues, here's a link to his blog post about genetic testing for PHPV:

http://kidsretina.blogspot.com/2010/12/genetic-testing-for-unilateral.html

and I think that's it for tonight, I'll do some more in the next few days.

2 comments:

  1. You are a super mum, and a great woman Thanks for keeping us up to date (even people like me who dont get all the medical terms) But i just love this little guy xxx

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  2. Thanks Nancy xxx He's the best little man <3

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