World Glaucoma Week – Chat Highlights March 4, 2015

World Glaucoma Week

Chat Highlights – March 4, 2015 Guest Speaker – Dr. Jillia Bird

Lorraine Miller – Editor, Chat Topic Researcher

 

Moderator:  Our guest speaker for tonight is Dr. Jillia Bird, current President of the World Glaucoma Patient Association.  Dr. Bird is an optometrist from Antigua.   Welcome back, Dr. Bird, to our chat!

P:   When is World Glaucoma Week this year?

Dr. Bird:   World Glaucoma Week (WGW) starts this Sunday, March 8thand runs through Saturday, March 14th.

P:   What is the theme of the 2015 World Glaucoma Week?

Dr. Bird:   It is a world wide effort to raise more awareness of glaucoma.    The theme this year is carried over from last year, B-I-G Beat Invisible Glaucoma.   B-I-G because BIG problems like glaucoma need BIG-GER efforts to solve.

P:   How many countries are participating this year?

Dr. Bird:   We have encouraged countries on every continent to participate.  I think last year we had over fifty.   Obviously, some countries do huge events like in India, the Philippines, and Australia.  No effort to raise awareness is too small.  This chat group is one such effort and should be registered as a participant at http://www.wgweek.net/wgw.  The link also takes everyone to our website.

P:   How can we tell people about glaucoma?

Dr. Bird:   Another effort encouraged is a BIG Breakfast so that families can sit together to eat and talk about glaucoma.  Church groups are good along with PTA meetings.  I am speaking at many churches next week.  I will be showing slides and breaking glaucoma down into simple terms that everyone can understand.   Social media is so powerful.

P:   Given our over use of social utilities, we could also place an ad campaign on YouTube to help spread BIG.

P:   Are there any new events planned for the 2015 World Glaucoma Week?

Dr. Bird:   There’s a wide variety of events already listed on the world map.  I have seen plays, talks, breakfasts, runs, and walks.

P: Dr. Bird, what about education podcasts? Have they been used?

Dr. Bird:   A collaborative video sounds exciting.  It could show linkups in many countries.  Something like “We Are the World” a few years ago.

P:   Has anything changed with World Glaucoma Week since we chatted with you last year?

Dr. Bird:   More countries are reporting for one.   I think the registration process is a bit more streamlined.  It is easier now so we are seeing some countries like the Philippines submitting items.

P:   What have been the most successful events planned in past years?

Dr. Bird:   Lectures, screenings and outdoor events like runs and walks are the most successful.   Here in Antigua, we are attempting a Dark Dining Dinner.  Patrons pay to dine in a darkened restaurant using alternate senses to appreciate the food and entertainment.

P:   What are you the most excited about with this year’s event?

Dr. Bird:   For me, the winner is our “March for Sight” throughout the streets.  It is a carnival-like affair.   We attract thousands.  We’re having a BIG Breakfast at the same time.  The breakfast will be on sale to the marchers.  Some folks ask, “What’s the point of doing this?”    Attracting attention for glaucoma is our goal.  We even tried an online video chat, like this one, but with video.

P:   Would you share with us a little about the World Glaucoma Patient Association (WGPA)?

Dr. Bird:   We had Amy Dixon as a guest presenter.  Several countries had logged in.  WGPA evolved to link patients around the world.

Moderator:   For those who do not know Amy Dixon, she is a blind sommelier and a US Paralympian.  Her Seeing Eye dog, Elvis, is famous in his own right.  She is an incredible person!

Dr. Bird:   Recently funding has been a tad scarce so our initiative to get patients to travel to meetings to present hasn’t been doing so well.   We’ve been attempting to present the patient’s side so that doctors can improve strategies of communication.   It was a fantastic idea when industry supporters were plentiful.   Funding has recently withered away.

I’m presenting at a symposium during the Hong Kong World Glaucoma Congress and have four or five patients speaking.  Some have to pay their own way.   Glaucoma is really boiling down to be an information problem.   Medicine and science have made tremendous leaps but until patients understand the necessity for early detection and proper treatment, the blindness rates won’t drop.

P:  Unfortunately, it is an out-of-sight out-of-mind disease. No pun intended. Perhaps it will take many more people losing their vision before it becomes in the forefront of peoples’ minds.   Testimonials for me are powerful. I am new to all of this but I know there are many who have been fighting the battle for a long time. I read about them all the time in social media. I think people are affected on a more emotional level when they see ordinary people going through it and sharing their story.  Videos that share information about glaucoma are great, but adding testimonials make them all the more powerful. Perhaps a video could be put together and posted in different forms of social media. It could be shared over and over as information, which is how information currently is disseminated.

Dr. Bird:   Especially in the poorer countries where access to sophisticated equipment isn’t available.  Earliest diagnosis is critical.

P:   There are some who argue that “early detection is protection” is a fallacy given the invisibility of this disease. How can we counteract this?

Dr. Bird:   Testimonials are extremely powerful.   We need to educate about risk factors.   We need to teach young people how to calculate a glaucoma risk and start annual WELL exams.

P:   What is a WELL exam?

Dr. Bird:   Our populations are aging and people are living longer so the numbers of blind will rise dramatically.   By WELL exam I mean having an eye exam even though nothing is bothering you.  Open angle glaucoma has no symptoms so it is difficult to detect until well into the disease especially in young people.  Juvenile glaucoma is a rotten disease but is often caught late.

P:   Apart from awareness, how else can we as patients ensure we get closer to a cure?

Dr. Bird:   As patients, you should support organizations known for reputable research.

P:  I feel medicine must come up with new ways to diagnose earlier. I had vision exams for the last ten years and it was only two years ago that my optometrist said “Houston, we have a problem.” I have normal tension open angle glaucoma.

Dr. Bird:   Encourage your specialists to form chat groups in their office.   Volunteer to get it started.  I bet your doctor won’t refuse.   Many are too busy saving eyes to bother with supporting and educating patients.  They need help!

P:   How has social media affected World Glaucoma Week?

Dr. Bird:   In ophthalmology offices, patient groups would save time and energy for doctors and save the sight of individuals.   Social media has helped immensely.   Facebook, Twitter and Instagram are being used to spread images and messages.   Our online support groups are great.  Pinterest is a great tool, too.

P:   There are tutor specialists employed to undertake professional development for the residents and fellows in ophthalmology.   There are academic specialists as well so perhaps getting them on board would help.

Dr. Bird:   We have attracted a great group of folks!

P:   Do you ever receive feedback about the effect of your efforts with World Glaucoma Week?

Dr. Bird:   I hear appreciative patients every day amazed at what they are learning in the support group.   Yes, feedback does come in many forms.  None is truly scientific.   Since we began here in Antigua, our awareness has grown in the population.   Getting reports from the countries submitting activities speaks volumes to our success with WGW.

P:   How would you like to see World Glaucoma Week evolve in the future?

Dr. Bird:   I wish WGW to be an automatic mushrooming event with more and more countries on board each year.   Involvement down to the community level is my dream, where small towns and villages start planning activities for the next year at the end of World Glaucoma Week.

Moderator:  Unfortunately, our time is up.  We would like to thank Dr. Bird for joining us.  Have a good World Glaucoma Week and spread the word!

 

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About the Author:

The Glaucoma Service Foundation’s mission is to preserve or enhance the health of all people with glaucoma and to provide a model of medical care by supporting the educational and research efforts of the physicians on the Wills Eye Institute Glaucoma Service, the largest glaucoma diagnosis and treatment center in the country.

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