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05/21/2012 07:38 AM

RP and pregnancy(page 2)

rm82
Posts: 16
New Member

Fight4Sight, you are awesome. Smile Thank you for your kind and comforting words. For what it's worth, I would never judge anyone for choosing to bring a child into the world. It is a very personal choice, and kind of why we exist, biologically. Smile People are quick to point fingers, but come on. Do parents with genetic links to diabetes or heart disease forego having kids? Definitely not. RP is no different.

I'm currently trying to get in touch with the Vanderbilt Eye Institute in Nashville, which is where one of the other specialists I've seen works. I'm going to ask her about her professional opinion. It might not change my mind on the subject (that I'm probably leaning toward adoption now), but it MIGHT help some prospective parents here! I'll report back if she has anything to add. Smile

Thanks again!

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05/21/2012 02:22 PM
Scrattyme
ScrattymePosts: 786
Member

What I am about to say is not to change your mind about adoption at all. I commend many people in the world who adapt and change the lives of children all over the world. And yes, there are a lot of little children out there needing a good home. So what I say is based on my own personal experience. There is no Dr. in the world who can tell you without a shadow of a doubt when or how you will lose your sight. NO Dr. has the ability to see into your future to be able to tell you whether or not it will effect your vision to have a child. I was criticized terribly for having my son. I was already legally blind at age 15 with only 5 degrees of peripheral. I lost no vision during my pregancy. I was told at age 15 that I would be blind by the time I turned 25. I am now 43 and I still have very useable vision. My son is now 26 and shows no sign whatsoever of having RP. My point is this. I know the fear of losing sight. I've lived it my whole life. BUT, don't miss out on the good things in life because it "may" or "may not" cause you vision loss. There is a possibility that you will retain what vision you have for many, many, many years. The best that you can do in life is to try not to stress. I commend you for your choice to adapt and I wish you and your husband all of the happiness in the world. But please, don't always base your choices on what Dr.s tell you because they are only human too. Good luck!!

05/21/2012 03:34 PM
Lazy1
Lazy1  
Posts: 2771
Senior Member

I did not know about my RP until I had 2 children. I did have visual field tests throughout my life. These did not show an increase of changes in my vision during or after my pregnancy. My boys are 17 and 20 and do not show signs of RP.

It is your personal choice whether to adopt or have a child. Just telling you my story.


05/21/2012 04:05 PM
rm82
Posts: 16
New Member

Thanks so much, Scrattyme. I hear what you're saying, and I'm so sorry that you've been judged. This is a private decision regardless of which path you take. I hate how insensitive people can be. Sad

I don't intend to live my life on "maybes," but this is a big maybe. Adoption seems likely for us, but it's not a certainty yet. Any chance of losing more sight is terrifying. Sad


05/21/2012 04:07 PM
rm82
Posts: 16
New Member

Thanks for sharing, Lazy1. It helps. I hope this thread is useful to all women with RP, regardless of what they choose. I hope that we as a community can support each other in our choices.

05/21/2012 08:49 PM
hfoster
hfoster  
Posts: 60
Member

Well said Fight4Sight; my sentiments exactly Smile And rm82, im quite certain that having parents that care for you and are able to provide you with with a safe, secure home, proper nutrition THROUGHOUT childhood, educational opportuniies etc... has a far more significant impact than looking like your parents or breast feeding.

05/22/2012 05:32 AM
rm82
Posts: 16
New Member

Well said! Thank you. Smile

Hopefully, I will hear back from previous doctors and be able to report back with more info. Haven't heard from my old specialist in Nashville yet.


05/22/2012 12:23 PM
rm82
Posts: 16
New Member

Not much of an update, but it's something: I called the Vitreoretinal Foundation in Memphis. I used to go there as a teen. The woman I spoke with has worked at the clinic for 13 years, and says that while they treat a variety of retina-related conditions, young women with RP have been few and far between. She said that she could literally count us on one hand.

She also said that because I got my original news from Mass Eye & Ear, I should take it to heart. They're a huge, international clinic and have undoubtedly seen far more young, female RP patients than any other clinic I've ever been to. Sad

Still waiting to hear from Nashville.


05/22/2012 02:56 PM
rm82
Posts: 16
New Member

Ok, heard back from my doctor at the Vanderbilt clinic in Nashville. She, herself, has not noticed a correlation between RP and vision loss during pregnancy, however she was quick to point out that she hasn't seen a lot of patients with RP before and after pregnancy. As with the Memphis clinic, she mentioned that Mass Eye & Ear is huge and that a lot more RP patients go through those doors.

In short, she said that I should live my life in the way that works best for me. She was extremely nice. I'm looking forward to working with her in the future. Apparently within the next five years they hope to map out all kinds of RP and look deeper for genetic answers to those of us who are "atypical," as I am.

So, in summary, Mass Eye & Ear was the only of three clinics to tell me with confidence that there is a strong observable link between RP and vision loss during pregnancy--strong enough that they tell women who ask that vision loss is actually "expected" during pregnancy. Memphis doesn't have enough data to share, and Nashville hasn't noticed the same thing, but has also seen very few female RP patients of reproductive age, period.

To me, all signs point to avoiding natural pregnancy. It hasn't even been a week yet, so I'm still registering all of this and trying to make sense of it all.... but this is where I'm leaning right now, today. I hope that this thread can be a good resource for other women with RP, regardless of the paths they choose.

In short, stay informed and do what's right for you. *big hugs all around*


05/30/2012 09:58 AM
peggy03045
 
Posts: 121
Member

My mom could never drive, had 4 kids in her 40's (catholic surprises after being told she couldnt!). I had my daughter in 2005, got diagnosed in 2008. The visual disturbances i had on fertility drugs and while pregnant were not the same as my rp symptoms. Pregnancy is known to cause blurred vision in non retina disease ppl. Personally, i dont think its related cuz rp progression is so variable. Personally, i would think having hcg raging in ur body would be a good thing! Anyway, they'll have a fix b4 its too bad for u, so go for it, have a baby and get on the list to adopt. Now a 13k tax deduction for adopting! And trying is a fun hobby!

Smile. Cant let this stop ur life.

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