World Glaucoma Week – Glaucoma around the World Chat
Highlights – March 5, 2014
Guest Speaker – Dr. Jillia Bird
Lorraine Miller – Editor, Chat Topic Researcher
Moderator: Our guest expert for tonight is Dr. Jillia Bird, current President of the World Glaucoma Patient Association. Dr. Bird is an optometrist from Antigua. Besides being named the International Optometrist of the Year in 2013, Dr. Bird was also named the 2013 Alumna of the Year at State University of New York. In 2013, Dr. Bird was cited as “One of the 35 Most Influential Women in Optics.” We would like to welcome Dr. Jillia Bird to our chat.
P: What is World Glaucoma Week and how long has it been in existence?
Dr. Bird: Around the year 2004, a group of glaucoma specialists realized too many patients were still going blind from glaucoma. They developed World Glaucoma Day which grew into World Glaucoma Week to help focus attention on the disease. World Glaucoma Day has grown to almost one hundred fifty participating countries from the first event in 2008 to present day.
P: When will World Glaucoma Week occur?
Dr. Bird: This year, World Glaucoma Week is March 9th-15th. World Glaucoma Day is always March 12th.
P: Why was World Glaucoma Week developed and celebrated?
Dr. Bird: We realized too many patients were still “in the dark” about the devastating eye disease. This disease is slowly getting more awareness. Committees were then formed in many countries with both regional representatives and country representatives selected.
P: World Glaucoma Week is a joint initiative. Would you tell us a little more about the World Glaucoma Association and the World Glaucoma Patient Association?
Dr. Bird: World Glaucoma Day was jointly conceived by the World Glaucoma Association (WGA) and the World Glaucoma Patient Association (WGPA). WGA (http://www.worldglaucoma.org/) is a society of glaucoma doctors. WGPA (http://www.worldgpa.org/) was then formed to represent patients and consists of patients, doctors, and industry representatives seeking to unite patients around the world, which is not an easy task. I represent the Caribbean, for example, so each year I motivate islands to do awareness activities that include public lectures, screenings, documentaries, races, walks, the theatre, and bike rides. It has grown creatively and it is wonderful to see the ideas develop. WGPA has sought to encourage patient support group formation in quite a few countries.
There is a searchable database of support groups available on our website. There are approximately fifty groups so one may be close to your home. If you start your own group, it can be listed in our database. I would also recommend our online groups as a method to offer support.
Moderator: There are Facebook groups. Glaucoma – Eye is at https://www.facebook.com/groups/192743684077833/.
Dr. Bird: Yes, WGPA has its own Facebook page at https://www.facebook.com/pages/World-Glaucoma-Patient-Association/211949638829611. There are so many informative Facebook groups.
P: Very true, the private one, Glaucoma – Eye is growing very fast for glaucoma support.
Dr. Bird: It is a bit worrisome wondering whether people are sometimes joining mischievously. People are usually genuine. Support is important for people going through these problems. Sometimes, just talking to others going through the same situation is very helpful.
P: What are The World’s B-I-G Breakfasts during World Glaucoma Week?
Dr. Bird: This year we are launching a B-I-G Breakfast campaign. We are seeking to bring families and communities together to talk about glaucoma. Countries are asked to hold breakfasts and report on the event. Raising the issue of the importance of nutrition is also an essential part of general health management.
Moderator: There is a map at World Glaucoma Week which will help in understanding how many events are occurring. http://www.wgweek.net/index.php?option=com_content&view=article&id=50&Itemid=55
Dr. Bird: Quite a few countries have come on board. Australia has a ton of B-I-G Breakfasts planned. Antigua has only one breakfast in the Main City. Families can have a breakfast in the comfort of their own home to participate. We want people to talk about glaucoma among families. The breakfasts are just another way to shine a light on the disease.
P: Does B-I-G stand for anything?
Dr. Bird: Yes it mean “Beat Invisible Glaucoma.” Some glaucoma isn’t invisible and the ravages of the disease aren’t invisible. The symptoms are so minimal in open angle glaucoma that it is largely invisible.
P: How is information and the promotion of glaucoma awareness being disseminated?
Dr. Bird: In most countries, literature is circulated and large media campaigns with radio, television, public lectures and screenings are common. Groups have gotten very creative. There is even a “Sing for Sight” Karaoke in Trinidad.
Moderator: We enlisted our Facebook friends to ask Google for a Doodle on World Glaucoma Day. We will find out on March 12th if they heard our plea. Last year, they did not do it because the event was not old enough.
Dr. Bird: There are “Runs” in Tanzania by doctors to raise funds. Photo contests are held. Film documentaries by glaucoma patients have been produced. The website, www.wgweek.net, has a host of past and present events to browse.
P: What type of testing is done at the glaucoma screenings that some countries have planned during World Glaucoma Week?
Dr. Bird: It is very difficult to screen for glaucoma in a public setting. Eye pressures are taken and optic nerve exams are performed. This year, we are trying to set up a version of an online visual field at our B-I-G Breakfast.
P: I already have glaucoma. Why should I care about World Glaucoma Week?
Dr. Bird: You should want to lift the level of awareness of this complicated group of disorders that are not very well understood, not only for your own management, but also for your family who may inherit your type of glaucoma. World Glaucoma Week focuses a spotlight on new therapies, research, drugs, and surgeries as well as improving our understanding of the disease. Successful outcomes in glaucoma depend on patients’ understanding of the disease and becoming more active partners in its management.
P: Has a Facebook page been created for additional information?
P: I am just a glaucoma patient. What can I do to help?
Dr. Bird: You can talk to others who may be going through similar experiences. You can also talk to your doctor about forming support groups in the office and talking to family members and church groups about the urgent need for eye examinations.
P: We can also share on our Facebook profiles. I plan to make a statement about glaucoma on World Glaucoma Day. We can also tweet on our twitter accounts. We can also blog if we are bloggers. We can also share on Linkedin if we have profiles. Word up glaucoma!
Dr. Bird: Understanding glaucoma is winning half the battle against its blindness. It is complicated.
Word up, I like that!
P: Next year’s campaign should be, Word Up Glaucoma!
Dr. Bird: Great idea! The blindness that persists is largely due to lack of awareness of the many issues surrounding glaucoma.
P: Some events are creative in their method of teaching about glaucoma. Would you share a few of your favorites?
Dr. Bird: I involve the young people in Antigua. I believe if they understand the nature of the disease from a young age then early detection can be a regular occurrence. I also have poster and art competitions along with photo contests. This year, a video chat is being planned by our National Youth Ambassadors that everyone is invited to join. On Thursday, March 13th, we are featuring Amy Dixon’s journey with her dog, Elvis. Logon details will be shared. It is an inspiring story because Amy’s glaucoma is complicated but she has helped so many people face their struggles with courage.
P: Dr. Bird, is there anything we have not covered in the chat this evening that you would like to share?
Dr. Bird: I would like to reiterate that the biggest failure with reducing blindness from glaucoma is really the lack of understanding by populations of people of the complicated diverse group of disorders that make up glaucoma. Until we raise the awareness and educate people, all the fancy medicine and surgical procedures won’t reduce blindness. This is why support groups are so critical. Doctors get too busy trying to cure and treat patients that they have no time or energy to educate their patients.
Moderator: Wonderful and informative chat, Dr. Bird! We really appreciate you being our very special guest! Best of luck with World Glaucoma Week!