A love of horses as a little girl that blossomed into a career on the racetrack as an exercise rider, apprentice jockey and trainer in New York and New Jersey led to Jeannine Edwards landing a job as a reporter in 1993.
Branching out from covering horses to doing interviews and handicapping horse races, Edwards’ set her sights on the big-time. She became a sportscaster for ESPN in 1995 and it seemed she was well on her way covering horses as well as college basketball and football and the retirement of greats like Shaquille O’Neal. But in 2000 a mysterious illness that Edwards had never heard of threatened her life in front of the camera.
“I was shocked when the doctor said I had Sjogren’s syndrome,” she says.
According to the Mayo clinic, Sjogren’s (SHOW-grins) syndrome is a disorder of the immune system that often accompanies other immune-system disorders, such as rheumatoid arthritis and lupus. Its two most common symptoms are dry eyes and a dry mouth caused by the mucous membranes and moisture-secreting glands of the eyes and mouth producing fewer tears and saliva than normal. The condition is much more common in women and although you can develop Sjogren’s at any age, most people are older than 40 at the time of diagnosis.
In Edwards’ case, her only symptom is extreme dry eyes that she says can at times be “pure misery.”
“It only affects my eyes that I know of, I’ve never noticed issues anywhere else. But that’s been enough since my extreme dry eyes has been terrible to deal with and get under control. I have been on and off prednisone and regularly use steroid eye drops. I have also had my tear ducts plugged and then cauterized to try to prevent the tearing that happens as a result of the dryness and have tried drugs that treat the symptoms of autoimmune diseases like lupus and rheumatoid arthritis like Plaquenil,” she says.
Edwards says for years she kept her condition quiet, not mentioning it to coworkers or even friends. “A lot of people don’t even know what it is so it’s really not something I’ve ever put out there,” she says. But these days she is talking about life with Sjogren’s in the hopes that others won’t feel they have to suffer in silence.
“It helps all of us to hear how other people are dealing with the disease,” she says.
Here’s how Edwards is coping.
The problem: Misdiagnoses and not knowing what was wrong.
Edwards’ diagnosis came about 11 years ago, after 2 years of dealing with suspicious dry eyes. Initially she tried to shrug off her symptoms, but then her eyes were becoming so dry that she started seeing an eye doctor and a general practitioner, too. “I had been back and forth to the doctor’s office but no one could find out what was going on. I finally had a procedure to flush my tear duct because the doctors suspected the horrible dry eyes were the result of a blocked tear duct,” says Edwards.
“Ironically even though they were so dry, my eyes were tearing a lot but that turned out to be reflux tearing because my eyes were too dry and weren’t making enough of the natural oils that coats and lubricates your eye.”
The solution: Don’t ignore your symptoms
Edwards says is she had to do it all over again; she would not have justified away her dry eyes and tearing when they first began. “I could have saved myself two years of suffering.” She suggests talking to your doctor at the first sign of eye dryness or irritation. ‘Even if it’s not Sjogren’s you could save yourself the agony of dealing with symptoms from other things, too.”
The problem: Managing the weather
There can be days during the winter when the cold temperatures and wind are agonizing to Edwards’ eyes. “That makes it hard to take the dog for a walk or go out to the barn to see my horses,” says Edwards.
The solution: Blocking the wind
Edwards is determined her Sjogren’s doesn’t stop her from doing what she wants to do. “I won’t let it keep me on the sidelines. I suck it up and deal, I won’t let it stop me even though my eyes might feel miserable.”
When she goes outside on windy or cold days, she wears welder’s glasses. “They’re plastic, wraparound safety glasses that cut the wind when walking your dog or even doing things outside like gardening.”
The problem: Circulating air
My eyes reflex tear constantly even if I’m indoors where it’s not windy. That tearing and dryness leaves them feeling raw, like the nerves in my eyes are exposed. It’s much worse in the winter, when the air is dry and cold.
The solution: Redirecting air
Edwards says she has a humidifier going in her house year round. And she stays away from fans, too. “I don’t use ceiling fans and I never ever blow the heat or air conditioning through vents that aim toward your body in the car. I make sure the air is always blowing through the vents that are on the floor because any movement of air at all irritates eyes.”
The problem: Eyes tearing on the job
The excessive tearing can leave Edwards looking like a raccoon when her mascara smears and runs down her face. “And that’s not a good look on television,” she says. Having make-up run in her eyes also makes Edwards’ vision blurry, which could be dangerous when she’s driving and makes every day things like reading email or reading a grocery list tough.
“I use waterproof make-up to keep it from running down my face or getting in my eyes. And I only use products that are fragrance-free because fragrances in make-up moisturizers, soaps, facial washes, etc. irritate my eyes and cause more tearing.”
And Edwards stocks up on tissues, too. “I always have tissues with me if I have to dab away tears.”
The problem: Dry, tired eyes at the end of a long day
“I’m unable to read before going to bed because eyes are too painful from the dryness. And at the end of a long day of working or just running errands my eyes are aching and in need of relief,” say Edwards.
The solution: Rice baggies
Edwards used to put an ice pack on her face because it felt good in the moment. “That was a bit counterproductive because the cold doesn’t promote the production of your eye’s natural secretions.” Her doctors suggested using hot compresses to increase oil secretions instead of cold compresses.
Edwards found “rice baggies” made by filling a nylon stocking with a cup of uncooked rice, and then tying the stocking with yarn or ribbon right above the rice to be helpful. “They’re like bean bags that you can warm up in the microwave and put on your eyes. They conform to eyes and are better than a warm washcloth because repeatedly putting warm, wet washcloth dries you out,” says Edwards.
According to the Mayo Clinic, the symptoms of Sjogren’s syndrome include:
- Dry eyes. Your eyes may burn, itch or feel gritty — as if there’s sand in them.
- Dry mouth. Your mouth may feel like it’s full of cotton, making it difficult to swallow or speak.
- Joint pain, swelling and stiffness
- Swollen salivary glands — particularly the set located behind your jaw and in front of your ears
- Skin rashes or dry skin
- Vaginal dryness
- Persistent dry cough
- Prolonged fatigue