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".


Perth, Western Australia

Wednesday, May 19, 2010

It gets easier...

I had an email from another mum who has a child just diagnosed with PHPV (or PFVS, as they seem to know it more by that acronym in the US) and she was feeling how I felt right at the start of this journey. I just wanted to put it out there that it does get easier. I was told that by other parents with APHAKIC kids (kids without the natural lens of the eye due to surgery or defect) and I never thought I'd get there and stop crying but it does get easier. You always think about it but already, after only a few months, it doesn't have that "sting" to it like it did before. So... chin up and stay strong for your little ones xx

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