It is more important now than ever for patients to be informed healthcare consumers. But what does someone do when they get a diagnosis of something like Sjogren's ("show-grins") syndrome? It is one of the most prevalent diseases that is hardly known. Many are hearing about it for the first time because of Venus Williams even though it's been described in the literature since the late 1800's.
If you have struggled with dry eyes, dry mouth, joint pain, fatigue, digestive problems, and neuropathy, there are resources both locally and nationally. SjoBham is an active support group in the Birmingham area sanctioned by the Sjogren's Syndrome Foundation (SSF.) SSF offers a wide variety of resources for both doctors and patients, and has recently teamed up with Daiichi-Sankyo, Inc. in the Defy the Dry campaign to help ignite the conversation between doctors and patients about dryness symptoms. The goal is to reduce the average time for diagnosis by 50 percent in five years. Currently, the average time to diagnosis is seven years.
I urge anyone with Sjogren's to get involved - educate yourself, your family, your doctors, your friends, and anyone who will listen. Speak up, and make Sjogren's a household name for the estimated 4 million Americans who are living with this "unknown" disease!