Lynn Johnson was a teacher with the Philadelphia school district for 23 years. She’s married and has two children and a twin sister. On Thanksgiving, 2015 Lynn started to feel off-balance and nauseous. She went to urgent care and was told to take Sudafed for the fluid in her year. By Friday she'd lost her hearing. Monday she went to her GP and was referred to an ENT, who suspected an autoimmune disorder and gave her a low dose of steroids.
Later Lynn had an MRI and complete blood work, which confirmed the autoimmune diagnosis, specifically Cogan's syndrome, which results in bilateral vestibular hypofunction. Basically Lynn’s vestibular system and eyes are being attacked by her own cells, which could cause her to lose her hearing and vision.
“It was a journey of pain,” says Lynn. “I didn’t know if I would lose my hearing and balance, and there was no cure and no medication to help me.”
Lynn’s doctor says she'll eventually need a cochlear implant. She can't work or drive, not to mention the difficulty of performing everyday activities. “It’s very disabling,” she says.
Lynn turned to Facebook to support, which was great, but she found the Facebook groups two-dimensional. Lynn is a social person, so being able to see people and watch their body language/visual cues makes her feel validated and not so alone.
Lynn found what she needed in VEDA’s new online support groups. “An online support group is three dimensional,” says Lynn. “We start with good news, and get practical information that I can use right away.”
Lynn says she’s forging friendships in her online support group. “You can be more honest in an online support group (compared to forums or social media) because you are seeing someone face to face. This makes your communication more transparent and accountable. When you look at someone, you can see their pain, and that helps you empathize with them.”
VEDA is still experimenting with our online support groups. Currently, there are more people who want to participate than volunteers willing to facilitate a group. If you are interested in facilitating an online support group, please contact VEDA’s Patient Support Coordinator, Cassey Parrish, at [email protected] or call 800.837.8428. If you would like to participate in an online support group you can fill out this form to be added to a waiting list.