When Susan Barajas was diagnosed with Sjögren’s disease ten years ago, she had never heard of it. “My diagnosis came quickly, but I had no idea what it meant,” she says. “I didn’t know a single person with this disease, and that sense of being alone was hard. Like so many others, I wondered what this meant for my health, my future, and my daily life.”
That changed when she attended her first Sjögren’s Foundation National Patient Conference. “It was totally life changing to be in a room with 300 other people who have this disease,” she recalls. “For the first time, I felt seen.”
The experience connected Susan to a community that would shape the next decade of her life. Today, she serves as the Chair of the Sjögren’s Foundation Board of Directors and continues to lead by example, helping others find the same sense of belonging and hope she once needed herself.
“We’re all in this together,” Susan says. “You’re not alone. We’re here to help each other. We share in the joys, the successes, and we support each other in the hard times.”
A Champion for Patients
Susan’s connection to the Foundation began with community and grew into leadership. From volunteering as an Awareness Ambassador to leading a support group to serving on the Board, she has seen how powerful connection can be. She also supported the Foundation’s Walk program at the local level, serving as Chair of the Los Angeles and West Coast Walks for several years, beginning with the first LA Walk in 2018. “The idea of people feeling alone just rips my heart,” she says. “I want them to feel less alone and more hopeful.”
Her volunteerism comes from understanding what it feels like to wait — to wait for clarity, for relief, for recognition, and for someone who truly understands what you’re going through.
She also found strength in movement. After joining Team Sjögren’s, Susan completed ten half marathons in her 60s. “Running became a way to prove to myself that I could still set goals and reach them,” she says. “I met friends all over the country through Team Sjögren’s, and that sense of community kept me going.”
In recent years, she’s had to take a step back from running on her doctor’s advice. “I actually had to stop running because my blood pressure is too low, which is exasperated by the Raynaud’s,” she explains. “It’s all connected — the calcium channel blockers open up your veins, your blood pressure drops, and then my cardiologist puts me on something to keep my blood pressure up. You get in this circle.”
Even so, Susan has stayed active in other ways. She continues to lead a local support group, serves on the Board of Directors, stays connected with friends she met through Team Sjögren’s, and travels often. “I like to challenge myself,” she says. “Even if it’s not running anymore, I find new ways to stay engaged and keep moving forward.”
Leading and volunteering haven’t always been easy. Like many patients, Susan manages fatigue and pain that can make even small commitments challenging. But staying involved helps her feel connected and purposeful.
Over the past decade, Susan has seen the Foundation transform how Sjögren’s is recognized and discussed in the medical community. “There’s still a lot of work to do, but the awareness has changed so much,” she says. “We’re being talked about in places we weren’t before, and more professionals are showing real interest in Sjögren’s at conferences and in research. That gives me hope for what’s ahead.”
That progress gives Susan perspective on how far the community has come — and how each person’s efforts, big or small, contribute to lasting change. For her, that belief extends beyond advocacy to daily life.
Susan believes in taking charge of what can be controlled and finding strength in optimism. “When you have a chronic illness, there’s so much you can’t control,” she says. “But what you can control, your attitude, exercise, eating healthy, those things help you live your best life.”
Susan takes the Foundation with her wherever she goes. No matter the destination, she is always raising visibility for Sjögren’s.
Her motivation is simple: to support others who are still waiting. Waiting to be seen and heard. Waiting for relief. Waiting for research. Waiting for symptoms to be recognized for what they are.
“I believe so deeply in what the Foundation is doing that I’m investing in it, and I hope you will too,” she says. “I want others to have the same sense of community I feel.”
Living Fully and Leading with Hope
Even while managing symptoms like fatigue and dryness, Susan continues to live a full and active life, traveling often and staying engaged with others. Sjögren’s affects every part of life, but Susan encourages others to focus on what’s still possible. “Some days are hard,” she says. “But I try to find one thing I can do that makes me feel like myself.”
Susan’s story reflects what the Foundation stands for: connection, community, progress, and hope. Together, we can build a future where everyone with Sjögren’s disease feels seen, supported, and understood.
When Susan Barajas was diagnosed with Sjögren’s disease ten years ago, she had never heard of it. “My diagnosis came quickly, but I had no idea what it meant,” she says. “I didn’t know a single person with this disease, and that sense of being alone was hard. Like so many others, I wondered what this meant for my health, my future, and my daily life.”
That changed when she attended her first Sjögren’s Foundation National Patient Conference. “It was totally life changing to be in a room with 300 other people who have this disease,” she recalls. “For the first time, I felt seen.”
The experience connected Susan to a community that would shape the next decade of her life. Today, she serves as the Chair of the Sjögren’s Foundation Board of Directors and continues to lead by example, helping others find the same sense of belonging and hope she once needed herself.
“We’re all in this together,” Susan says. “You’re not alone. We’re here to help each other. We share in the joys, the successes, and we support each other in the hard times.”
A Champion for Patients
Susan’s connection to the Foundation began with community and grew into leadership. From volunteering as an Awareness Ambassador to leading a support group to serving on the Board, she has seen how powerful connection can be. She also supported the Foundation’s Walk program at the local level, serving as Chair of the Los Angeles and West Coast Walks for several years, beginning with the first LA Walk in 2018. “The idea of people feeling alone just rips my heart,” she says. “I want them to feel less alone and more hopeful.”
Her volunteerism comes from understanding what it feels like to wait — to wait for clarity, for relief, for recognition, and for someone who truly understands what you’re going through.
She also found strength in movement. After joining Team Sjögren’s, Susan completed ten half marathons in her 60s. “Running became a way to prove to myself that I could still set goals and reach them,” she says. “I met friends all over the country through Team Sjögren’s, and that sense of community kept me going.”
In recent years, she’s had to take a step back from running on her doctor’s advice. “I actually had to stop running because my blood pressure is too low, which is exasperated by the Raynaud’s,” she explains. “It’s all connected — the calcium channel blockers open up your veins, your blood pressure drops, and then my cardiologist puts me on something to keep my blood pressure up. You get in this circle.”
Even so, Susan has stayed active in other ways. She continues to lead a local support group, serves on the Board of Directors, stays connected with friends she met through Team Sjögren’s, and travels often. “I like to challenge myself,” she says. “Even if it’s not running anymore, I find new ways to stay engaged and keep moving forward.”
Leading and volunteering haven’t always been easy. Like many patients, Susan manages fatigue and pain that can make even small commitments challenging. But staying involved helps her feel connected and purposeful.
Over the past decade, Susan has seen the Foundation transform how Sjögren’s is recognized and discussed in the medical community. “There’s still a lot of work to do, but the awareness has changed so much,” she says. “We’re being talked about in places we weren’t before, and more professionals are showing real interest in Sjögren’s at conferences and in research. That gives me hope for what’s ahead.”
That progress gives Susan perspective on how far the community has come — and how each person’s efforts, big or small, contribute to lasting change. For her, that belief extends beyond advocacy to daily life.
Susan believes in taking charge of what can be controlled and finding strength in optimism. “When you have a chronic illness, there’s so much you can’t control,” she says. “But what you can control, your attitude, exercise, eating healthy, those things help you live your best life.”
No matter the destination, she is always raising visibility for Sjögren’s.
Why Susan is Giving Back This Giving Tuesday
This Giving Tuesday, Susan is giving back in another powerful way. She will match every donation made to the Sjögren’s Foundation dollar for dollar, doubling the impact, up to $20,000! No matter the size of the gift, every dollar given will be matched to advance research, educate healthcare professionals, and support patients still waiting to be seen, heard, and understood.
Her motivation is simple: to support others who are still waiting. Waiting to be seen and heard. Waiting for relief. Waiting for research. Waiting for symptoms to be recognized for what they are.
“I believe so deeply in what the Foundation is doing that I’m investing in it, and I hope you will too,” she says. “I want others to have the same sense of community I feel.”
Living Fully and Leading with Hope
Even while managing symptoms like fatigue and dryness, Susan continues to live a full and active life, traveling often and staying engaged with others. Sjögren’s affects every part of life, but Susan encourages others to focus on what’s still possible. “Some days are hard,” she says. “But I try to find one thing I can do that makes me feel like myself.”
Susan’s story reflects what the Foundation stands for: connection, community, progress, and hope. Together, we can build a future where everyone with Sjögren’s disease feels seen, supported, and understood.
Give today to double your impact for everyone still waiting.