Submitted By: Laverne Crowder, Founder/Executive Director of the Optic Neuritis Foundation, Inc.
The Optic Neuritis Foundation, Inc. (ONF) is a 501(c)(3) nonprofit organization with a mission to increase public awareness about optic neuritis (ON) and other neuropathies, support research and patient-care efforts by donating to hospitals and eye centers, and support patients with the diagnosis of optic neuritis and other neuropathies by providing financial and/or resource assistance.
I started this foundation in 2009 after receiving my own optic neuritis diagnosis. I had previously enjoyed 20/20 vision and had never experienced issues with my vision; however, one day while working, I found myself bumping into things that were right in front of me. I felt like I had something in my eye that I could not remove, and I had pain with the movement of my eye. I went to an ophthalmologist and could not see in my right eye during my exam. After seeing several doctors, I received the opportunity to visit Emory Eye Center in Atlanta, Georgia. I was hospitalized for one week, and with steroid treatment, I regained my sight. However, today, I have no center vision and poor peripheral vision in my right eye. My diagnosis: optic neuritis.
Optic neuritis may have destroyed my sight, but it did not take my vision. I learned through my pain that there are others facing the same health issue, and my assignment became clear: Serve.
Optic neuritis is an inflammation of the optic nerve. There are many interesting stats about the onset of this condition. Here are just a few:
- Optic neuritis is the first sign for 15-20% of people diagnosed with multiple sclerosis (MS).
- Only 3% of patients go blind from optic neuritis; most patients regain their sight.
- Studies show that 19% of patients will have a recurrence of optic neuritis in the affected eye, and 17% of patients will develop optic neuritis in the other eye within 10 years.
What causes the onset of optic neuritis? Great question! From what we have found, MS is the dominant cause, but there are other causes, including the following:
- Cat scratch fever
- Myambutol (drug to treat tuberculosis)
- Lyme disease
- STDs (e.g., syphilis, herpes)
One of our vision doctors, Dr. Robert Spector, said it best: “You don’t have to have MS to have Optic Neuritis, and you don’t have to have Optic Neuritis to have MS.”
From our research, we have discovered that young adults between the ages of 18-45 are most affected by optic neuritis, an estimated 115 out of 100,000 people have optic neuritis, and women are most likely to experience the onset of optic neuritis. The image below from the Canadian Neuro-Opthamology Group shows a clear representation of the vision of optic neuritis patients.
I am thankful that my vision is stable, and I aim every day to inform and encourage others and let them know that optic neuritis is not fatal—but it is definitely not fair. At ONF, we have board members who care as much as I do about the vision health of others. We have many opportunities at ONF for the public to learn more about optic neuritis and about what we do. We are on Facebook, Twitter, LinkedIn, and YouTube. We have worked so far with two board-certified neuro-ophthalmologists, who have helped us create educational videos about optic neuritis and MS, and professionals from the Multiple Sclerosis Center of Atlanta, who collaborated with us on educational seminars on MS and vision health. We will continue to grow throughout 2016 as we educate the public about optic neuropathies.
My goal in writing this blog post is to spread awareness about optic neuritis—and to share some hope: Only 3% of people with optic neuritis go blind; many regain their sight. I know . . . I know what you are going to say: “Well, your vision did not completely come back”? You are right, but I did not know then what I know now, and I waited before I acted. That is why I encourage you to know your body, and if something is not right, please visit an ophthalmologist. Share your vision history with your doctor and share your concerns. Take action today!