Sjögren’s Foundation Donor to Match Each World Sjögren’s Day Pledge With a $2 Donation, Up to 5,000 Pledges (a $10,000 donation)!
Before her diagnosis, Debby Vivari knew something wasn’t right. She had trouble wearing contact lenses, even the soft ones. “I had a friend who worked in vision care who jokingly said, ‘I can get a dog to wear contacts, you’ll be fine.’ But I just couldn’t do it. They hurt. It didn’t make sense at the time.” She also had more cavities than most people she knew and often felt tired for no clear reason. But the symptom that really changed everything was the sudden onset of insomnia.
“I have always been a world class sleeper. If it was dark, I was sleeping. If we were driving home from some place in the winter, and it was 6 o’clock, I would sleep.” So, when she suddenly couldn’t sleep at all, it was terrifying.
“I was turning into a lunatic,” she said. “I had two teenagers at home. And I was still working. And, you know, I kept up a good front at work because I was working up to being a very senior person at my job.”
Her search for answers started with a sleep study at a hospital lab in Washington, D.C. She felt out of place from the start and didn’t quite fit the typical sleep clinic profile. She barely slept that night, and in the morning, the technician told her, “Okay, you can get up. You win. You slept less than anybody else.”
She tried all kinds of treatments: behavioral routines, medications, new specialists. Nothing really worked. “It was just terrible.”
Eventually, she found a sleep specialist at Johns Hopkins who helped her taper off the old medications and build a new plan. “That guy who I still see or talk to if I don’t need to see him... said, ‘Okay, we need different drugs. But the first thing we have to do is get you off what you’re on. So, it’s going to get worse before it gets better.’”
More symptoms started to show up, and luckily, her primary care doctor referred her to a rheumatologist who pulled the pieces together. That’s when Debby first heard the word Sjögren’s. “Of course, I had never heard of it, just like nobody else has ever heard of it.” Suddenly, the dry eyes, fatigue, and strange sleep patterns made sense. Dry mouth started a year later and other symptoms continued to show up.
Debby and her sisters (left to right): Andi, Debby, Lisa, Carole
Getting diagnosed didn’t solve everything. It meant figuring out how to manage a disease that affects almost every part of daily life.
People don’t realize how exhausting Sjögren’s is. Even on days when you look fine, you’re not.
Managing Sjögren’s, Debby said, takes more than prescriptions. Debby acknowledges that managing it can be especially hard for those without support, information, or access to care — and even with resources, it’s still overwhelming at times.
“You need to be smart, you need to have money and you need to do everything you can to help yourself. Taking care of yourself is...it’s hard. It’s very hard. And I don’t mean to brag, but I’m a relatively smart person, and it’s hard for me to do.”
She pointed out how expensive and difficult it is to manage the condition day to day. "If you can’t afford all of the prescriptions and products you need, all of your symptoms will get worse. And it’s not just dry eyes and dry mouth — Sjögren’s affects your whole body."
Despite the challenges, Debby kept going. “I decided I’m not going to let anybody tell me what I can (or can’t) do. So, I became PTA president. And I went from working part time to full time.”
Debby recognizes that not everyone can push forward like she did, but she wants to encourage people not to give up and to find things that bring you joy and keep you grounded.
For Debby, one of those things is travel.
"Travel has always been one of my great loves. I try to make it work, but it takes a toll. I have to pack carefully, plan for rest days, make sure I stay hydrated. Sometimes I’ve had to adjust or cancel things, but I still try to go."
Debby and her husband Bruce
Giving back has also been a constant in Debby’s life. “I started giving a relatively small amount many years ago. And as I was able to give more, that’s what I did. But you don’t have to feel like you have to wait until you give a lot of money. Lots of people giving a little bit adds up to a lot.”
Debby’s journey with Sjögren’s has taught her how isolating, frustrating, and expensive it can be to live with a misunderstood disease, and how important it is to build visibility and support, one small action at a time.
That’s why, this year, Debby is turning her experience into action. To help shine a light on this often-overlooked disease, she has pledged to donate $2 for every World Sjögren’s Day pledge, up to 5,000 pledges (a $10,000 donation)!
Taking the World Sjögren’s Day Pledge is a simple but powerful way to raise awareness and honor someone impacted by the disease. Leading up to July 23, you can take the pledge by choosing one or more small actions:
For Debby, every action is a step toward change. Each pledge represents a voice speaking up, a story being shared, or a life being honored. And collectively, these small steps send a powerful message that Sjögren’s deserves to be seen, taken seriously, and understood.
I want people to get diagnosed faster. I want doctors to listen and take people seriously. And I want the next person going through this to find answers sooner than I did.
Debby knows that change doesn’t happen all at once. It starts with speaking up at a doctor’s office. Asking questions. Sharing your experience. Taking one small step, then another.
"I realized this disease doesn’t belong to my doctors, it belongs to me. They’re part of my team, but I have to lead it."
Her story is a reminder that self-advocacy matters and that even when it's hard, finding your voice and taking ownership of your journey can help you feel more in control. And every action, every story, every conversation, every pledge, is part of something bigger. Each small step sends a powerful message that Sjögren’s deserves to be seen, taken seriously, and understood.
Thank you to our World Sjögren's Day Campaign Sponsor: Novartis
Sjögren’s Foundation Donor to Match Each World Sjögren’s Day Pledge With a $2 Donation, Up to 5,000 Pledges (a $10,000 donation)!
Before her diagnosis, Debby Vivari knew something wasn’t right. She had trouble wearing contact lenses, even the soft ones. “I had a friend who worked in vision care who jokingly said, ‘I can get a dog to wear contacts, you’ll be fine.’ But I just couldn’t do it. They hurt. It didn’t make sense at the time.” She also had more cavities than most people she knew and often felt tired for no clear reason. But the symptom that really changed everything was the sudden onset of insomnia.
“I have always been a world class sleeper. If it was dark, I was sleeping. If we were driving home from some place in the winter, and it was 6 o’clock, I would sleep.” So, when she suddenly couldn’t sleep at all, it was terrifying.
“I was turning into a lunatic,” she said. “I had two teenagers at home. And I was still working. And, you know, I kept up a good front at work because I was working up to being a very senior person at my job.”
Her search for answers started with a sleep study at a hospital lab in Washington, D.C. She felt out of place from the start and didn’t quite fit the typical sleep clinic profile. She barely slept that night, and in the morning, the technician told her, “Okay, you can get up. You win. You slept less than anybody else.”
She tried all kinds of treatments: behavioral routines, medications, new specialists. Nothing really worked. “It was just terrible.”
Eventually, she found a sleep specialist at Johns Hopkins who helped her taper off the old medications and build a new plan. “That guy who I still see or talk to if I don’t need to see him... said, ‘Okay, we need different drugs. But the first thing we have to do is get you off what you’re on. So, it’s going to get worse before it gets better.’”
More symptoms started to show up, and luckily, her primary care doctor referred her to a rheumatologist who pulled the pieces together. That’s when Debby first heard the word Sjögren’s. “Of course, I had never heard of it, just like nobody else has ever heard of it.” Suddenly, the dry eyes, fatigue, and strange sleep patterns made sense. Dry mouth started a year later and other symptoms continued to show up.
Andi, Debby, Lisa, Carole
Getting diagnosed didn’t solve everything. It meant figuring out how to manage a disease that affects almost every part of daily life.
Managing Sjögren’s, Debby said, takes more than prescriptions. Debby acknowledges that managing it can be especially hard for those without support, information, or access to care — and even with resources, it’s still overwhelming at times.
“You need to be smart, you need to have money and you need to do everything you can to help yourself. Taking care of yourself is...it’s hard. It’s very hard. And I don’t mean to brag, but I’m a relatively smart person, and it’s hard for me to do.”
She pointed out how expensive and difficult it is to manage the condition day to day. "If you can’t afford all of the prescriptions and products you need, all of your symptoms will get worse. And it’s not just dry eyes and dry mouth — Sjögren’s affects your whole body."
Despite the challenges, Debby kept going. “I decided I’m not going to let anybody tell me what I can (or can’t) do. So, I became PTA president. And I went from working part time to full time.”
Debby recognizes that not everyone can push forward like she did, but she wants to encourage people not to give up and to find things that bring you joy and keep you grounded.
For Debby, one of those things is travel.
"Travel has always been one of my great loves. I try to make it work, but it takes a toll. I have to pack carefully, plan for rest days, make sure I stay hydrated. Sometimes I’ve had to adjust or cancel things, but I still try to go."
Giving back has also been a constant in Debby’s life. “I started giving a relatively small amount many years ago. And as I was able to give more, that’s what I did. But you don’t have to feel like you have to wait until you give a lot of money. Lots of people giving a little bit adds up to a lot.”
Debby’s journey with Sjögren’s has taught her how isolating, frustrating, and expensive it can be to live with a misunderstood disease, and how important it is to build visibility and support, one small action at a time.
That’s why, this year, Debby is turning her experience into action. To help shine a light on this often-overlooked disease, she has pledged to donate $2 for every World Sjögren’s Day pledge, up to 5,000 pledges (a $10,000 donation)!
Taking the World Sjögren’s Day Pledge is a simple but powerful way to raise awareness and honor someone impacted by the disease. Leading up to July 23, you can take the pledge by choosing one or more small actions:
Click here to make a pledge for World Sjögren's Day!
For Debby, every action is a step toward change. Each pledge represents a voice speaking up, a story being shared, or a life being honored. And collectively, these small steps send a powerful message that Sjögren’s deserves to be seen, taken seriously, and understood.
Debby knows that change doesn’t happen all at once. It starts with speaking up at a doctor’s office. Asking questions. Sharing your experience. Taking one small step, then another.
"I realized this disease doesn’t belong to my doctors, it belongs to me. They’re part of my team, but I have to lead it."
Her story is a reminder that self-advocacy matters and that even when it's hard, finding your voice and taking ownership of your journey can help you feel more in control. And every action, every story, every conversation, every pledge, is part of something bigger. Each small step sends a powerful message that Sjögren’s deserves to be seen, taken seriously, and understood.
Thank you to our World Sjögren's Day Campaign Sponsor: Novartis