Smile for Glaucoma: an interview with the founders

I recently ran across The Smile Challenge: Smile for Glaucoma facebook page.  It aims to bring awareness to glaucoma and raise money for the Glaucoma Research Foundation by encouraging people to share photos of their smiles and stories about their experiences with glaucoma. The page is only a few months old, but has already reached hundreds of people around the world.  It’s a wonderful, upbeat, and very informative page that is definitely worth checking out.

I’ve gotten to know the founders of the page, Sydney and Shweta, who are as lovely and wonderful as their page.  I asked them a few questions about the project, but first I wanted to give their stories:

shweta

Shweta

Shweta was diagnosed with glaucoma when she was 21 and working on her masters degree. She dropped out briefly, while not telling any friends why. She underwent multiple surgeries and was able to go back to school and finish her law degree.

Sydney

Sydney

Sydney was diagnosed with congenital cataracts when she was two weeks old. At two months old after a lens removal surgery she was diagnosed with aphakic glaucoma. As an infant she had six surgeries on her eyes. For the first 18 years, her pressures were controlled with drop. But at age 18 her pressure went up to 45 in the left eye and she had an ahmed shunt put into her left eye, and the same procedure on her right eye when the pressure went up to 35. The ahmed shunt in her left eye failed and she had a baerveldt shunt put into that eye. Her pressures have been stable since, however she developed uveitis recently in her left eye. After treatment with drops it thankfully seems to be fading away.

The page has been really inspiring to read and look at, I’m wondering where you got the idea to start the page?

Sydney: A friend in the glaucoma support group saw a post of mine in which I stated I was uncomfortable smiling in pictures. She posted a picture of herself smiling and challenged me to do the same. I challenge others in the group to do it as well and eventually it grew into The Smile Challenge. Shweta saw how big it was getting and created the page.

Shweta: I got this idea from Sydney, she was the one who started a challenge in our Glaucoma Support Group which she named The Smile Challenge. I created a page named Smile for Glaucoma to raise awareness about glaucoma and to raise funds for its research. Glaucoma is not known to many people in India, the lack of knowledge about this disease inspired me to create this page so that others could get to know whats it like to be affected by glaucoma and to let everyone know that there are many disease which do not have a cure and that they are serious in nature. Later Sydney and I teamed up and renamed the page The Smile Challenge: Smile for Glaucoma.

What is your main goal for the page?

Shweta: The first main goal is to create and spread awareness and information about Glaucoma, and we don’t want to do that by just telling people what glaucoma is or what happens after people are diagnosed with glaucoma and such but we want the world to know how glaucoma affects the lives of those suffering from it and inspite of all that, they manage to put up a big smile on their faces. The second main goal is to raise funds for the Glaucoma Research Foundation to help them in bringing the research a little closer to a cure for glaucoma.

Sydney: My main goal for this page is to raise awareness and support for glaucoma. I want people to understand not only what glaucoma is but what it’s like to live with it. My secondary goal is to raise money for an AMAZING organization dedicated to making life easier for glaucoma patients and to funding research for a cure. The Glaucoma Research Foundation is a wonderful foundation that I fully support.

What plans do you have for the page?

Shweta: The page focuses on the lives of people living with glaucoma and their stories about the fight against it, so we just want to keep spreading smiles and stories about the battles of visually impaired and blind community. We are also looking into turning this venture into a non for profit organization someday and hopefully work on raising awareness and funds on a higher level and will continue to share smiles and inspiring stories through the page.

How did the two of you meet?

Shweta: We have been a part of glaucoma support group but never really came across each other. When Sydney started this smile challenge in the support group, I thought of taking that idea to the next level and created this page, Sydney asked me if she could be a part of this and our partnership went on to become an amazing friendship

What would you tell a parent whose child had been diagnosed with glaucoma?

Shweta: Firstly, do not panic, get to know what the disease is all about and how its going to affect the child, ask as many questions to the doctor as you’d like. Be regular on medicines and check ups. And my personal advise to a parent is to be very careful in not letting a child feel that he/she has a disability. I believe no one should put a limit on ones ability, especially a child’s.

Sydney: What I want them to know is low vision or no vision your child can have a bright and independent future. There are many different organizations dedicated to helping those affected by this disease. We are always here to support parents with children diagnosed with glaucoma and they are more than welcome to message our page with any questions they have. If we don’t know the answer we will work hard to help them find it.

What do you want the world to know about glaucoma?

Shweta: Glaucoma is a serious condition in which you start losing your eye sight which once lost can never be regained. Glaucoma is incurable but if someone has glaucoma, their life doesnt stop, it only changes. I urge everyone to be proactive towards their eyes, if you do visit an eye doctor for whatever reasons, get your eye pressures checked as that is one key factor in diagnosis of glaucoma. For precaution, make it a priority to get your eyes examined at least twice a year.

Sydney: I want them to know that we are fighters. We hope for a cure but in the meantime we love and support one another in this journey.


Many thanks again to Shweta and Sydney for their time and their energy and their smiles!  If you haven’t already, take a look at their page for a great smile or follow them on Twitter.

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2 responses to “Smile for Glaucoma: an interview with the founders

  1. My 9.5 year old son just got diagnosed with glaucoma 2 months ago. He was born with a rare condition called vascular staining. We were reassured it was not a medical threat….now 9.5 years later…it is…..we only found this out because of headaches he was getting…..his pediatrician referred us out cuz he wears glasses….this is the best thing that could have happened……his eye pressure was a 37 and a 33…..specialist told me eye sight is lost between 40 and 50 eye pressure…….

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  2. My 15 month old daughter was diagnosed with glaucoma today. She will be undergoing her first surgical procedure in 2 weeks. I am trying to remain positive here & would love more info on success stories if possible. It’s unfortunate that theres not enough research regarding this disease considering how rare it is. Currently praying for a miracle.

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