Comments on: PHPV: my perfect deformity (p2) http://veneratedcoconut.com/2010/03/15/phpv-persistent-hyperplastic-primary-vitreous-2/ {a travelogue through life} Mon, 30 Apr 2012 02:27:50 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: Anastasia http://veneratedcoconut.com/2010/03/15/phpv-persistent-hyperplastic-primary-vitreous-2/#comment-113 Anastasia Sun, 12 Jun 2011 01:27:44 +0000 http://kirtiklis.com/?p=1642#comment-113 Hi Martine, Thanks for the comment. Yes, this is my case, peripheral vision in the left and good sight in the right. I didn't go for cosmetic surgery largely because my trusted docs never recommended it. I did have some (a group) when I lived in California who suggested it, but my east coast docs always said it is better to protect the eyes. Also, there can be unwanted side effects of surgeries, and so I've always been happy to leave well enough alone. Medicine has become much more aggressive and invasive since I was a child. I've never really felt I needed it. Thanks for your comment! Don't worry too much about your daughter. She'll be fantastic. It's really not a huge deal. I have many friends in Australia--I almost moved there last year! Drove from Perth across the Nullabor to Adelaide, Melbourne, Canberra, Syndey, Port Macquarie, Yamba, and up to a national park on the border of Queensland. I still need to edit the photos!! http://kirtiklis.com/category/australia/ All best, A Hi Martine,

Thanks for the comment. Yes, this is my case, peripheral vision in the left and good sight in the right. I didn’t go for cosmetic surgery largely because my trusted docs never recommended it. I did have some (a group) when I lived in California who suggested it, but my east coast docs always said it is better to protect the eyes. Also, there can be unwanted side effects of surgeries, and so I’ve always been happy to leave well enough alone. Medicine has become much more aggressive and invasive since I was a child. I’ve never really felt I needed it.

Thanks for your comment! Don’t worry too much about your daughter. She’ll be fantastic. It’s really not a huge deal.

I have many friends in Australia–I almost moved there last year! Drove from Perth across the Nullabor to Adelaide, Melbourne, Canberra, Syndey, Port Macquarie, Yamba, and up to a national park on the border of Queensland. I still need to edit the photos!! http://kirtiklis.com/category/australia/

All best,
A

]]> By: Martine http://veneratedcoconut.com/2010/03/15/phpv-persistent-hyperplastic-primary-vitreous-2/#comment-112 Martine Mon, 30 May 2011 12:09:49 +0000 http://kirtiklis.com/?p=1642#comment-112 Hi Anastasia, thanks for sharing your life with PHPV with us. What a very strange condition, and as you say not much info out there... My daughter has just been diagnosed with PHPV, she is 3 mths old. We are over in Australia and they diagnosed it straight away. I noticed that her eyes were not aligned. They say that she has peripheral vision in her left and that her right eye is good (thank goodness!). Out of interest, why didn't you go for the cosmetic surgery? I was hoping to get this done for my daughter at a later stage. I would be interested to hear your thoughts. Thanks, Martine Hi Anastasia, thanks for sharing your life with PHPV with us. What a very strange condition, and as you say not much info out there… My daughter has just been diagnosed with PHPV, she is 3 mths old. We are over in Australia and they diagnosed it straight away. I noticed that her eyes were not aligned. They say that she has peripheral vision in her left and that her right eye is good (thank goodness!). Out of interest, why didn’t you go for the cosmetic surgery? I was hoping to get this done for my daughter at a later stage. I would be interested to hear your thoughts. Thanks, Martine

]]> By: Anastasia http://veneratedcoconut.com/2010/03/15/phpv-persistent-hyperplastic-primary-vitreous-2/#comment-111 Anastasia Wed, 23 Mar 2011 17:37:05 +0000 http://kirtiklis.com/?p=1642#comment-111 Hi Emily. Thanks for the comment. Two corneal transplants? Wow, that sounds intense. You could send photos--but I'm in NYC, too. We should have tea or lunch! I've never met anyone else with PHPV. Would be very interesting. ~A Hi Emily. Thanks for the comment. Two corneal transplants? Wow, that sounds intense. You could send photos–but I’m in NYC, too. We should have tea or lunch! I’ve never met anyone else with PHPV. Would be very interesting. ~A

]]> By: emily http://veneratedcoconut.com/2010/03/15/phpv-persistent-hyperplastic-primary-vitreous-2/#comment-110 emily Tue, 22 Mar 2011 18:36:27 +0000 http://kirtiklis.com/?p=1642#comment-110 Hi! I was also born with PHPV and am blind in my left eye. When I was three weeks old, my mother noticed my left looked cloudy and I was diagnosed with a cataract, which was removed right away. I've had two corneal transplants, the first one rejected within a few days. My left eye has always been a lighter shade of blue than the right and gets a little lazy when I'm tired or have eye strain. It's almost completely blind. I live in New York City and Dr. Ritterband is my Ophthalmologist. I could send you photos of my eyeball if you'd like to see and compare notes! Hi!

I was also born with PHPV and am blind in my left eye. When I was three weeks old, my mother noticed my left looked cloudy and I was diagnosed with a cataract, which was removed right away. I’ve had two corneal transplants, the first one rejected within a few days. My left eye has always been a lighter shade of blue than the right and gets a little lazy when I’m tired or have eye strain. It’s almost completely blind. I live in New York City and Dr. Ritterband is my Ophthalmologist.

I could send you photos of my eyeball if you’d like to see and compare notes!

]]> By: Anastasia http://veneratedcoconut.com/2010/03/15/phpv-persistent-hyperplastic-primary-vitreous-2/#comment-109 Anastasia Fri, 11 Mar 2011 15:20:44 +0000 http://kirtiklis.com/?p=1642#comment-109 Annmatie, yes, I can see out of the left side of my left eye and use it for peripheral vision. I actually see quite a bit with it, but mostly toward the left (lucky, as the right covers the right) and not the clearly--only the top of the eye chart. Thanks for your comment. I've lived a totally normal life, so don't worry too much about your son. :) Annmatie, yes, I can see out of the left side of my left eye and use it for peripheral vision. I actually see quite a bit with it, but mostly toward the left (lucky, as the right covers the right) and not the clearly–only the top of the eye chart. Thanks for your comment. I’ve lived a totally normal life, so don’t worry too much about your son. :)

]]> By: annmatie http://veneratedcoconut.com/2010/03/15/phpv-persistent-hyperplastic-primary-vitreous-2/#comment-108 annmatie Thu, 10 Mar 2011 09:54:29 +0000 http://kirtiklis.com/?p=1642#comment-108 my son of 5 years has phpv in his left eye and is now saying he can see at the very corner (if he looks to the left) of his eye its good to hear from other people with phpv my son of 5 years has phpv in his left eye and is now saying he can see at the very corner (if he looks to the left) of his eye its good to hear from other people with phpv

]]> By: Anastasia http://veneratedcoconut.com/2010/03/15/phpv-persistent-hyperplastic-primary-vitreous-2/#comment-107 Anastasia Fri, 13 Aug 2010 16:28:58 +0000 http://kirtiklis.com/?p=1642#comment-107 Hi Nancy. Thanks for the comment. :) Honestly, it's hard to find a good doctor for this condition because it is quite rare. I've never heard of anyone specializing in it, and the condition has so many problems associated with it, really different specialists could be called on (retinal, glaucoma, etc). If I were you, I'd try to find a doctor through a medical school in Houston, so that there's someone who's both up on and interested in the eye. If there aren't any teaching docs there, they might be able to recommend someone to you. It sounds, though, like a the main issue will be keeping the right eye healthy, so you might just want to keep trying until you find someone you have rapport with. PHPV doesn't develop later in life, so that wouldn't be a problem for her right eye, thank heavens. Good luck! ~Anastasia Hi Nancy. Thanks for the comment. :) Honestly, it’s hard to find a good doctor for this condition because it is quite rare. I’ve never heard of anyone specializing in it, and the condition has so many problems associated with it, really different specialists could be called on (retinal, glaucoma, etc). If I were you, I’d try to find a doctor through a medical school in Houston, so that there’s someone who’s both up on and interested in the eye. If there aren’t any teaching docs there, they might be able to recommend someone to you. It sounds, though, like a the main issue will be keeping the right eye healthy, so you might just want to keep trying until you find someone you have rapport with. PHPV doesn’t develop later in life, so that wouldn’t be a problem for her right eye, thank heavens. Good luck! ~Anastasia

]]> By: Anastasia http://veneratedcoconut.com/2010/03/15/phpv-persistent-hyperplastic-primary-vitreous-2/#comment-106 Anastasia Fri, 13 Aug 2010 16:23:18 +0000 http://kirtiklis.com/?p=1642#comment-106 My pleasure, J. I'm glad it was helpful. My pleasure, J. I’m glad it was helpful.

]]> By: Nancy http://veneratedcoconut.com/2010/03/15/phpv-persistent-hyperplastic-primary-vitreous-2/#comment-105 Nancy Fri, 13 Aug 2010 05:22:44 +0000 http://kirtiklis.com/?p=1642#comment-105 Thank you for your post! My 15 year old daughter was born with PHPV in her left eye and is completely blind in that eye. We live in the Houston area, and I was wondering how I would find an opthamologist who is familiar with PHPV. Is there a certain google search I could do? Thank you for your post! My 15 year old daughter was born with PHPV in her left eye and is completely blind in that eye. We live in the Houston area, and I was wondering how I would find an opthamologist who is familiar with PHPV. Is there a certain google search I could do?

]]> By: J O'Brien http://veneratedcoconut.com/2010/03/15/phpv-persistent-hyperplastic-primary-vitreous-2/#comment-104 J O'Brien Thu, 22 Jul 2010 20:59:36 +0000 http://kirtiklis.com/?p=1642#comment-104 Thank you for being open and honest about your condition. My daughter, who is 1, has PHPV and there is little out there in terms of reliable information so to hear it from a woman who lives with the condition is important for me. Good luck and best wishes, JO'B Thank you for being open and honest about your condition. My daughter, who is 1, has PHPV and there is little out there in terms of reliable information so to hear it from a woman who lives with the condition is important for me.

Good luck and best wishes,

JO’B

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