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My Glaucoma Story: Colleen Silveira (Video)

Colleen Silveira was diagnosed with glaucoma at age 35. "When I was diagnosed with glaucoma, it was pigmentary dispersion glaucoma. I did have surgery, and I think that surgery has been helping me. My pressure is still being monitored and maintained with eye drops, and my lifestyle is still an active one."

Colleen Silveira: My Glaucoma Story from Glaucoma Research

We interviewed Colleen at our first annual Glaucoma Patient Summit in San Francisco, March 2019.

Video Transcript

Colleen Silveira: My name is Colleen Silveira. I'm from Chicago, Illinois. Born and raised. One of the big things with my life has been being an athlete and being active and competing in sports, and that's just been a huge part of who I am. When I was diagnosed with glaucoma, it was pigmentary dispersion glaucoma, which seems to be exertion based. And when that happened, I was saying to my doctors, "So are you telling me I'm succumbed to a life of Pilates and yoga, and I can't run and be active and all these sorts of things?" And they said, "Well, we don't know." At that time, I was training for an Ironman, which is swim, bike, run triathlons. And I decided to take the initiative with my doctor and say, "Can we make sure this isn't exertion based by having me come in right after I've done a long run or a long exercise and take my IOP?"

And we ended up doing that for a couple of years and found that there actually wasn't a correlation so much for me with my glaucoma and the exertion. I did have surgery and I think that surgery has definitely been helping me. As I was diagnosed when I was 35, and I'm 43 now, and my pressure is still being monitored and maintained with my eyedrops and with my lifestyle still being an active one. Once a month, I get a [Gleams] email newsletter of what's going on and I click on there, I get to see the fundraising that's happening. I get to see the latest research, different doctor opinions. It's very helpful. And being able to feel like you're not alone and that the country is working on something with this disease and a foundation is working on it. The cure for glaucoma is so necessary, especially because it's this silent disease.

I feel the immediacy within that is pretty prevalent. We don't know that our optic nerve is getting damaged. We don't feel it. Diabetics feel their blood sugars go down. A cardiac patient feels their heart palpitate. We don't feel this. And so [optic nerve] damage is occurring on many different scales and levels for people that we can't replace and get back. So to find a cure to stop that from happening at every age that glaucoma affects us at is critical, as we all want to see the world in which we live in.

I was so happy to get the email that you were doing your first Patient Summit ever. And the first thing that came into my head was, "I wonder who's going to all really be there? Is it going to be [people age] 70 years and up? And is it going to be my age group? Is it going to be all these different people with different stories?" And I've seen the collective of all of it. That was really important to actually see it's not just an elderly disease. People have gotten it even earlier than my age and now I can talk with them.

I was asked to also be in a trial study last night. And within that group, we all have now found each other and loved hearing each other's stories and wanted to now share a whole email support group with each other. And that just developed just because we all wanted to come here. And besides the Summit itself, that's a pretty cool thing that happened outside of it. But within this Summit that I've experienced today so far, the information in which the doctors are relaying all different topics of glaucoma has been a fantastic spread of ideas, thoughts, technology, concerns, having patient stories that also were on the panel today was great. But I think it just encompassed everything that any glaucoma patient has ever thought or wondered or had concern about. And so I would absolutely come to this every year if you guys were to have it.

End transcript.

Last reviewed on April 21, 2020

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