Coats' Girl
5 posts
May 06, 2009
4:36 PM
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My physician suggested I go for genetic counseling because I have Coats' and my hubby and I are wanting to try for a baby. Well, basically the genetics counselor told me what I've read on the Internet . . . often Coat's is sporadic, and sometimes it's caused by a genetic mutation. We talked about the possibility of passing on a mutated gene to a boy which could result in Norrie Disease. I've done a lot of thinking, and the idea of my child possibly having Coats' wouldn't stop me from trying to get pregnant. But the idea of Norrie Disease scares me. The genetics counselor is going to look into how often Coats' carriers pass on Norrie Disease to their children. My husband and I have not decided yet if we are going to have me genetically tested (which, by the way, it's about $400) to see if I have the mutated gene. We are waiting to hear about the numbers in regards to Norrie Disease. Even still . . . . . . this is where we are really torn. We don't know when researching and testing provides TOO much information. We are scared that not getting tested is irresponsible since this information is at our fingertips and we could prevent bringing someone into the world with a horrible disease. On the other hand, we are scared about doing the testing because of the possibility of knowing information that may stop us from having children when there is still a possibility of having a healthy baby. So, please weight in! To know or not to know. . .?
Let me know your thoughts!
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Butterfly1987
4 posts
May 27, 2009
9:12 AM
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Hi,
I am girl with Coats & I can understand you completely!! I want babies so much!! In the next 4 years or so if God helps me... I would really like to have my 1st. I've done some research, but I couldnt really find many answers related to this problem. Norrie is trully scary...!But I think we should be positive. If everyone would be so aware of every risk than the human race would perish.
Did you see this? http://genetics.emory.edu/ask/question.php?question_id=4061
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Butterfly1987
5 posts
May 27, 2009
9:14 AM
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coats disease and pregnancy
Posted by Pam1976 on 2/7/2007 8:22:13 PM. I've had coats disease since I was 5 years old and now am 30. I'm prgnant with my first child and was wondering if anyone else has been pregnant that has it and if it is genetic?
There is currently 1 reply.
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Re:coats disease and pregnancy
Posted by ihvcoats2 on 06/14/2007
I have Coats disease as well and a woman--I have it bilaterally which is a bit unusual so they say. From everything I have read based on the pitiful few real studies conducted, they believe Coats is genetic--one or two studies suggest that it results from a somatic mutation of the NDP gene, and that the mutation somhow blocks norrin, a protein. One other study suggests that there have been a couple of cases where the mutation was inherited mother to son; another posting I saw somewhere, a woman stated her father also had Coats. The incidence of diagnostic information available however seems to support the possibility that it is NOT an inherited genetic mutation, rather a fluke. Clearly there hasn't been much attention given to Coats beyond treatment most which resulted from research regarding other retinal diseases such as diabetic retinopathy, wet macular degeneration, and detached retina. As for me, I have two sons now 27 & 29--they were 2 & 4 when I was diagnosed with all the symptoms inclusive of detached retinas, cysts, vessels, leaking, etc in both eyes. Neither of them thus far have shown any evidence of the disease. The long and the short of it is this--don't worry because the disease generally does not run in families and if your child, God forbid, evidences the condition it can be treated. Enjoy your pregnancy and enjoy your children and don't stress about things you cannot control. THIS CALMED ME DOWN!!
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khristih
3 posts
Aug 29, 2009
5:48 PM
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Hi all, I was diagnosed with coats when I was 2. I did have my eye removed because it was thought that I had retinoblastoma. I am currenlty 38 years old and have 3 very healthy active children. I would not worry, enjoy your prenancys.
Last Edited on 29-Aug-2009 5:48 PM
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Butterfly1987
10 posts
Aug 30, 2009
5:41 AM
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Hello khristih!!You have 3 healthy children??? Congratulation! I'm so happy to hear such good news. You have just boys, just girls or both? Did you ever worry about genetics when you conceived them? If you dont mind can you please write us a little bit more about yout babies & pregnancy. You gave birth naturaly or rather C-section? Posts like this help the mom wannabes with Coats sleep better at night. Thank you!
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Butterfly1987
14 posts
Aug 30, 2009
7:28 AM
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http://www.geocities.com/tetley_56/my_coates.html
A story of a woman with Coats!
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khristih
4 posts
Aug 31, 2009
12:28 PM
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Hi Butterfly1987,
yes I have 3 very healthy, happy children. I have a 10 year old boy, a 7 year old boy and a 5 year old girl. I never worried about passing coats to my children. I was told it was not hereditary and just kind of believed that. I did freak out a little when my oldest started with a clogged tear ducked at two weeks old, but once I found out what it was, I was fine. Most infants get clogged tear ducts, so if that happens don't freak out. All of my pregnancies were healthy. I loved being pregnant and gave birth to all three naturally (with a little help from the epideral).It has never really been an issue for me though. I obviously knew I had my eye removed, but my parents never really explained to me why until I was an adult. It was no big deal in my house. It just was. I had never even heard the word coats and did not even fully understand what it was until my last docter explained it to me. I know weird, but it just wasn't a big deal. It never stopped me from doing anything. Don't let it stop you.
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Butterfly1987
15 posts
Aug 31, 2009
1:01 PM
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Thx for the post!! I wish you & your family health & happiness.
Yep when I was smaller doctors inclined to say is not genetic, rather a rare error. Just in the last years when I was reading more about the condition I saw that some people think there is a link with Norrie. I was shocked... because I was actually at peace with everything & then this gave me other dark thoughts.
Doctors wanted to enucleate my eye too (so scared of the procedure)... thinking I had Retinoblastoma. Coats is actually a very important differential diagnosis to Retinoblastoma. I remember doctors from my country doing lots of measurements to determine if it's coats or not. If you have coats your eye(if you keep it) is actually a bit smaller than the healthy one, I've noticed.
How did you adjust having an eye prosthetic? I'm thinking maybe I will eventually need one too because sometimes my eye hurts & I dont know for how many years will it look natural!
You know I'm from Romania, but I also went to a specialist in US in 1997 & he said that I can keep my eye for as long I feel happy with it, maybe even 90 years of age, he jocked.
I pray to God I will be able to keep it as long as possible!
Last Edited on 31-Aug-2009 1:08 PM
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liz32
5 posts
Sep 19, 2009
11:39 PM
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i had coats as a child which caused blindness in my left eye. I have had 2 boys now aged 13 and 9 natural births...no problems with their health at all! good luck x
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