Glaucoma Association Forum

Our forum is moving!

Our current forum will close on 29 June.

As we are soon to become Glaucoma UK, we are excited to announce our new website forum will be moving to the world’s largest online support network- HealthUnlocked. We have our own community, currently International Glaucoma Association. People with questions or comments about glaucoma and related topics can post them on the site. Much like on our existing forum, people can respond and our staff will moderate responses. However, there are more things we can do with this site compared to the existing forum – we can post surveys or tell you about events and you can make friends with other members of the community. One big advantage of using an external site like HealthUnlocked is that they take care of spam or other junk posts. That means we can focus on getting the right information to you. You can also join communities linked to other conditions or topics.

Simply register here healthunlocked.com and join our community by typing International Glaucoma Association in the search bar, then click on “Community” you can then add yourself to our page. If you have already registered, then just click here healthunlocked.com/iga-uk to join.

You can still post to this forum as normal until 29 June. However, you may find HealthUnlocked a better experience – why not try it today? If you need any help with signing up, please contact our helpline on 01233 64 81 70 or sightline@iga.org.uk.

View Topic "Congenital glaucoma and pregnancy"

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Posted By: Takili
Total Posts: 1
Joined Date: 4 Mar 2014
Hi All, I'm 32 years old and have glaucoma since I was a child. When I was four I've lost sight in my right eye and have poor vision in the right eye.
I stopped using eye drops before the first pregnancy and during breastfeeding (my son is 2 years old) and before the second (now I'm in 26th week).
During both my pregnancies intraocular pressure ranged between 12-18 and everything was more than good. First childbirth was done by caesarean section and now I'm seeking for answer whether it is possible natural childbirth in patients with glaucoma.
I wish you all the best and to stay strong, positive and
enjoy your pregnancy as much as you can. Motherhood is the most beautiful part of life :)

Posted : 4 Mar 2014
Posted By: Wenchington83
Total Posts: 1
Joined Date: 12 Dec 2013
Hi All, Wow firstly at 30 years old this is the first time I haven't felt like 'the odd one out'! I too have congenital glaucoma diagnosed at 14 months in both eyes. 29 years on, and countless operations later despite some vision loss I am still currently living a full life style. This year I gave birth to my first child. I was petrified the entire time over the "what if's?" Mostly due to the fact nobody could give me answers as there is so LITTLE documented on it. Whilst my pressures have been stable the last few years from surgery and currently drop free, I know that in a drop of a hat your eyes can stop playing ball and start misbehaving and I just wanted to know was I putting my sight at risk by having a family naturally? And if they did play up was there effective and safe treatment available during pregnancy? Every answer I got was wishy washy, I concluded nobody really knows but what I can share is my own experience. I very luckily had no problems during pregnancy, my pressures remained stable and I went onto have a natural delivery. My baby was referred to a specialist (through much persuasion of mine! Unless you're affected by it or an ophthalmologist, nobody gets the importance!) at 5 weeks old and thankfully despite being a gene carrier, my husband isn't so he is showing all the right signs for healthy eyes and they will continue to monitor him just to be sure until he is about 3. I to have had 2 check ups since and no major changes apart from a little "tired" vision from a few sleepless teething nights :-( The next dilemma will be do I do it again? With no evidence given I kind of feel I'm gambling and I am blessed to have the one. Maybe if there were more groups and support like this it may not remain such a mysterious topic x
Posted : 12 Dec 2013
Posted By: Pearly
Total Posts: 1
Joined Date: 29 Nov 2013
Wow, I cannot believe I just stumbled on to this group!

I have congenital glaucoma and I am 33 years old.   It was only discovered I had glaucoma shortly after turning 20. I happened to change opticians shortly before leaving for university and they found it in the first 5 minutes of my visit.  The frustrating thing is that I have had to wear glasses for nearsightedness since I was 7 and i was being seen by an opthimologist my entire childhood... he never checked my pressures. I complained of being sensitive to light all the time, always had headaches... suffered from severe migraines always originating behind my right eye. Still my gp and eye doctor didn't seem to think it had anything to do with my eyes.   Fast forward luckily it was not severe, however by the time it was discovered there had already been damage done and despite being put on various types of drops Lumigan now for 10 years the damage is slowly increasing.  I have just moved across the country and was referred to a top glaucoma specialist whom I saw yesterday for the first time.   He looked in my eyes for a total of 30 seconds and explained its definitely congenital and should have been easily caught in my early childhood.   He is now sending me for a battery of tests, one of which takes an entire day where they measure pressure every hour. I am ok with the tests but I am a bit upset that its gradually getting worse and it didn't have to be this way.   I have researched various operation procedures. My dr who has been taking care of me for the past 13 years was pro drops to maintain the 12-15 pressure, I have asked several times about operations to prevent further damage.. but here it seems they'd rather keep you on meds and wait until you are blind before operating. I talked to my optomotrist before moving out this way and he mention that several recent studies are showing surgery early on is a better option and saves sight of patients but also outweighs the risks. 

Being recently married - and being the age that i am hubby and I want to start trying for a baby this time next year.  And I found this thread!!! I have been searching for days for any medical data or professional opinions on CG and pregnancy also looking for information on rates of passing on the disease to my babies .  As far as we know hubby's side does not have glaucoma, and no one in my family has CG either. Were any of you lovely ladies tested genetically for this? Had it crossed your mind?  for those who have had babies how did they care for your CG during pregnancy and were there any affects on the baby?  I am sorry for such personal questions. but to be honest this is the first place I have found that understands how i feel. my family doesn't seem to understand how worrisome it is for me and are quick to offer antidotes of positive thinking.  Which is great, but I am more about facts and understanding - these two things will make me feel more at easy

thank you all for sharing -  reading through the previous posts has really helped me feel so so normal. 


Posted : 29 Nov 2013
Posted By: 09lucylove
Total Posts: 1
Joined Date: 23 Aug 2013
Hi it's amazing to see that I am not thE only women with congenital glaucoma. I am not currently planning on having children but I do want a baby in the future i am not sure how becoming pregnant will affect my congenital glaucoma I would love to here other women's experience who have gone through pregnancy and I also will like to know how that affected your children. It makes me feel better to know that I am not the only person going through this
Posted : 23 Aug 2013
Posted By: withmaps
Total Posts: 1
Joined Date: 21 Jun 2013
I would love to get in contact with everyone from this post to see how your pregnancies went and how your children are doing. I would private message you all, but I can't figure out how, as I just joined this site.

I'm currently 26 years old and have had glaucoma since I was a child. My husband and I would like to try for a child later this year, so my eye specialist has pulled me off all of me medications (azopt, alphagan, and betimol) for three weeks to see how my eye responds as he would like me to be off my meds while trying / during the first trimester. My pressure, on meds, runs consistently in the mid-20s. I'm worried I won't be able to make it the three weeks without medications.

Posted : 21 Jun 2013

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