Collaborating for Change: Meet Laura Wingate

Collaboration among patient groups is crucial to our mission of improving healthcare, advancing research, and empowering the community throughout every step of their journey. Laura’s personal story is a testament to the strength of our collective efforts. As the Executive Vice President of Education, Support, and Advocacy at the Crohn’s & Colitis Foundation and someone living with an autoimmune disease, Laura embodies the intersection of personal experience and professional dedication. Her story not only highlights the challenges faced by individuals with autoimmune conditions but also underscores the importance of unity and shared purpose in driving meaningful change.

We are incredibly grateful that the Crohn’s & Colitis Foundation is a member of our National Coalition of Autoimmune Patient Groups. It is essential for patient advocacy organizations and individual advocates like Laura to join together and collaborate in our ongoing fight for better patient outcomes.

The Journey to Diagnosis

Laura’s journey to being diagnosed with Sjögren’s required tremendous advocacy, persistence, patience, and a fierce amount of support. Despite spending most of her professional life working as a patient advocate and supporting others navigating the complex world of healthcare, Laura herself became extremely frustrated. As someone familiar with the system, she found it increasingly difficult to explain her growing number of symptoms.

Laura started experiencing symptoms in her early teens. It began with a benign rash on her breast, for which she consulted several dermatologists and specialists. The rash was labeled as mast cell disease, and she was put on high doses of steroids, but the rash never went away. Next came gastrointestinal (GI) symptoms. She was diagnosed with Crohn’s disease, but her colonoscopies never quite confirmed this diagnosis. Her doctors suspected she might have Small Intestinal Bacterial Overgrowth (SIBO), but that diagnosis was insufficient to account for the breadth and depth of her symptoms, which had persisted for nearly a decade.

As she consulted more specialists, Laura saw an ophthalmologist who noted that, in addition to needing reading glasses, she had extremely dry eyes. When she asked if she should use eye drops, the doctor shrugged and said “sure.”

One summer, her symptoms began to take over her life. She experienced intense GI symptoms, mouth ulcers, vaginal dryness, abdominal pain, mucus discharge every time she went to the bathroom, extreme fatigue, and more. When it became too much to handle, she went to the emergency room, pleading for support and pain relief. However, just a few hours later, she was dismissed with a recommendation to see a psychiatrist, as her symptoms were presumed to be manifestations of anxiety and depression. Unfortunately, Laura is one of thousands of young women who hear this diagnosis when seeking help for complicated medical issues.

Ironically, one night while she was in the emergency room, she was scheduled to speak on a webinar led by a world-renowned GI physician. When Laura messaged him to explain her situation, he immediately arranged a call with her for the next day. Knowing her history and some details of her medical journey, the doctor sensed that something wasn’t adding up. This conversation became a turning point for Laura.

The doctor listened intently to her complex medical history, taking detailed notes. When she finished, he told her that he didn’t think she had a GI issue. He suspected her GI symptoms were a side effect of a rheumatologic issue. He then helped Laura secure an appointment with a top rheumatologist two weeks later.

At the appointment, the rheumatologist quickly identified the next steps. She told Laura, “I have to run some tests, but you’re going to fail them. And then you’re going to fail this test and this one. After that, I’ll be able to perform a lip biopsy with saliva, which I expect will confirm my diagnosis.” Sure enough, Laura’s lip biopsy came back positive. The ENT that she had been seeing for years for recurring sinus infections did the biopsy and was finally able to diagnosis Sjögren’s disease.

Laura began treatment, and after 10 years, the rash on her breast disappeared, along with many of the other symptoms that had plagued her for so long. “This medication changed my life. I’m still on it to this day,” Laura said.

Finding Support and Adapting to Living with an Autoimmune Disease

Laura shared that she feels lucky she was already working and serving as a patient advocate during the day. Working alongside Inflammatory Bowel Disease (IBD) patients she had already learned so much about living with an autoimmune disease. As soon as she received an official Sjögren’s diagnosis, Laura went online and began researching the disease and reading other patients’ stories. Through their experiences, she discovered tips for managing her symptoms, including strategies for coping with fatigue, exercises to keep her joints limber while minimizing exhaustion, and ways to care for her mental health, among other valuable insights.

Laura’s Advice for Those Struggling with Autoimmune Disease  

• Trust yourself. If you feel that something is wrong, believe in your instincts. Don’t let anyone dismiss your symptoms; if you sense something isn’t right, keep pursuing answers. You know your body better than anyone else, and that’s an undeniable truth. “In the quiet phases of my disease, I would often ignore my symptoms, telling myself I was okay, even though it felt too overwhelming to handle. I only returned to doctors and medication when my symptoms flared up again. I wish I had paid attention sooner and fought for a diagnosis earlier. If I had known more, I would have done more. Trust your body and instincts—don’t ignore health problems,” Laura said.
• Find a supportive care team. Keep searching until you find doctors who make you feel seen, heard, and genuinely cared for. Look for a clinician who treats you as a whole person. Engage in open dialogue, brainstorm together, and seek a holistic approach to your care. Even if your disease affects only one or a few parts of your body, everything you experience has physical and mental impacts that are often more significant than you realize. Having someone who considers the whole picture makes a huge difference.
• Be prepared for mixed feelings after a diagnosis. While receiving a diagnosis can bring a sense of relief, it can also lead to a period of mourning, knowing that your life has changed and will always be different. Connect with people who understand your specific journey, often other patients with the same or another autoimmune disease. Even if they haven’t experienced exactly what you have, they can relate from their own perspective and understand what it’s like to manage everything you’re facing.
• Use technology to your advantage. Take photos with your phone when symptoms are at their worst—rashes, swelling, or anything visible—and share them with your doctor, either in person or through electronic messaging. This allows your provider to see what’s happening in real time, even if the symptoms have subsided somewhat before your appointment. It also helps clarify whether you should be concerned about what you’re experiencing and seek immediate medical attention, or simply monitor the situation to ensure it doesn’t worsen.

Collaborating for Change

“At a recent policy conference, I connected with advocates from various autoimmune patient organizations, including the Autoimmune Association. We share a common goal: creating a better future for people living with autoimmune disease. I was deeply moved and felt it was time to stand up and share my story. I realized that if I had heard a story like mine years ago, my path to diagnosis might have been shorter, louder, and more impactful,” Laura said. “When patient organizations stand together, our collective voices become stronger, increasing the chance for real, lasting change.”