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 "baby with glaucoma due to port wine stain"

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Posted By: Jessrick123
Total Posts: 5
Joined Date: 5 Aug 2009
I would really like some advice or to hear of anyone who has gone through this. My daughter was born with a pws on the left side of her face this has given her glaucoma.

My daughter was diagnosed at 2 weeks old with glaucoma and has only undergone laser on her eye so far which hasn't worked.

We were told today that she will need a goniotomy if that doesn't work then the next operation that is more risky and invasive however we were also told because of the pws that this hinders the operations working and to be prepared for her to loose her sight in her left eye.

As you can imagine i'm totally distraught and hoping to hear of anybody who might be able to help me please.
Posted : 5 Aug 2009
Posted By: Nicbean
Total Posts: 13
Joined Date: 10 Jun 2009
Hi jessrick,

i have only just read the site and noticed your e mail. so sorry to hear about your daughter. If you leave an updated message of where you are up to i will give you all the advice i possibly can with my experience of glaucoma.

yours nicbean
Posted : 5 Aug 2009
Posted By: Jessrick123
Total Posts: 5
Joined Date: 5 Aug 2009
Hi nicbean

sorry about the late reply i've just read your message so happy new year! Anyway my daughter has had a goniotomy in her left eye now in september which worked so well it pulled the iris in to where the drainage was made so she had to go in for a 2nd op which has now corrected it. Mia has had a eua at the beginning of december and her pressure was low and nothing had changed in her sight since july!

We're crossing everything that this has worked as the chances with mia having a pws are only 50/50. The pws usually fights against any operations done on the eyes for glaucoma.

Posted : 5 Aug 2009
Posted By: Sightline
Total Posts: 309
Joined Date: 20 Feb 2009
Hello jessrick,

We have just read your message and wondered if you have been given details of the National Blind Childrens Society. The society was set to give help, advice and emotional support for families who have children with visual impairment. If you want to contact them their details are as follows:

Tel: 01278 764770 freephone: 08007811444

Web: www.nbcs.org.uk Email: enquiries@nbcs.org.uk

I hope this information is useful to you and others who have been on this forum.

Sightline.
Posted : 5 Aug 2009
Posted By: Jessrick123
Total Posts: 5
Joined Date: 5 Aug 2009
thank you sight line
Posted : 5 Aug 2009

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