Meet Ines, “No Boundaries” 2016 Participant
By Carolyn VanBrocklin, Communications Specialist, Disability.gov Team
Ines juggles brightly-colored peppers between her hands as she waits for her photo shoot to begin. Her infectious laugh echoes throughout the kitchen, as the peppers bounce off the counter and roll to a stop. The shoot starts, and in between clicks of the camera Ines adjusts the blue scarf looped around her neck, which she chose because it coordinates with theSjogren’s syndrome awareness bracelet proudly worn on her wrist.
The kitchen is where Ines feels most at home. Since immigrating to the U.S. from Nicaragua 24 years ago, she has honed her cooking skills to become a master of numerous international cuisines. She is well versed in the nuances of Greek, Chinese and Cuban cuisine, to name a few. Her specialty is soup – from hearty minestrone to creamy Avgolemono.
For years, Sjogren’s syndrome was the nameless monster that threatened to limit Ines’s abilities in the kitchen and her occupation as a nanny. Doctors were at first not able to diagnose what originally seemed like an allergy to the sun and a severe case of dry eyes. Some thought she had multiple sclerosis, since Ines also has Raynaud’s disease, which causes parts of the body – specifically the fingers and toes – to go numb as a reaction to cold weather or stress. It wasn’t until 2012, when she was treated at the National Institutes of Health, that she was finally diagnosed with primary Sjogren’s syndrome, an autoimmune disorder.
Sjorgren’s occurs in flare ups. Before Ines received a diagnosis, she would go to the emergency room for treatment from the sudden symptoms. Doctors there weren’t able to provide any relief because they didn’t know what condition she had. Now that she is empowered with knowledge about her disability, she is able to take control and prepare when she feels a flare coming on. These flares vary in impact and cause Ines to have difficulty performing even simple tasks, like opening a water bottle or climbing the stairs. Sometimes they can be unpredictable and Ines credits her employers with the ability to request accommodations when needed. She’s been a nanny for the same families for 10 years and they have built a mutual understanding that she might not always be able to perform at 100 percent and may need to go home early to rest.
There currently isn’t a cure for Sjogren’s, but Ines manages her disability with medications and healthy, mostly vegetarian, eating habits. She also makes sure to take time to rest if she senses a flare coming on. She has been classified as have a “unique case” of Sjogren’s because she had symptoms for 11 years before being diagnosed. Ines says it was a relief to finally put a name to something that had been impacting her health for years.
While living with Sjogren’s syndrome certainly has its struggles, Ines says she thinks it’s also been a blessing. She has become a stronger person through it and has earned a new appreciation for life, seeing every day as a gift. Ines’s transformation have not gone unnoticed by others, as her employer noted her buoyant optimism and how she has become empowered by learning how to manage her disability. Ines has become active with the Sjogren’s syndrome Foundation, helping spread awareness and participating in the Sjogren’s Walkabout each year.
Ines’ goal for participating in the “No Boundaries” Photo Project was to share information about Sjogren’s and how it affects those who live with it. She resolves to continue raising awareness and educating others about Sjogren’s, especially those in the Hispanic community. “We need to do more,” she says, “so people see how debilitating and frustrating it is because there is no specific cure or medicine.” Four million people in the U.S. have Sjogren’s, making it the second most common autoimmune disorder after arthritis. Three years ago, it officially became classified as a disability so that people with Sjogren’s could receive disability benefits.
For those who have Sjogren’s syndrome, Ines has some words of wisdom that she lives by every day: “Be strong. Be hopeful. Understand that every day is a challenge. There is grace in having a positive attitude.”
The cameras finally stop clicking, and the photo shoot comes to an end. Ines says that her face is sore from smiling so much and cracks a few more jokes with the team. And then yet another smile lights up her face.