April is Sjögren’s Awareness Month and with an estimated four million Americans suffering from Sjögren’s, both men and women of different ages and ethnicities, it is one of the most prevalent but still lesser known autoimmune diseases. Sjögren’s is also not a “cookie cutter” disease and affects patients differently. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with it.
Using our new 2019 theme, Conquering the Complexities of Sjögren's, we are going to expand our #ThisIsSjögrens campaign to help others visualize the vast impact of the disease by posting a new patient story every day in April. While the daily posts will each give one small glimpse into living with Sjögren’s, by the end of April, we hope these 30 posts will shine a light on Sjögren’s and ensure a greater understanding of this complex disease.
We encourage you to use Sjögren’s Awareness Month as a way to talk about the disease. Every day is an opportunity to start a conversation about living with Sjögren’s and how it affects you. The more others understand, the more support you can find. Click here to learn more.
Candi B., 46 (diagnosed at 43), Disabled (Former payroll manger)
My most difficult Sjögren's symptoms is living with 49% lung function. I wish people knew how dangerous it is to call this only a “dry eye and dry mouth disease.”
Jen B., 46 (diagnosed at 45 after 3 years of being misdiagnosed)
My most debilitating Sjögren's symptoms are pain, fatigue & itchiness. I wish people knew that just because I’m smiling & getting things done, it doesn’t mean I’m not in excruciating pain.
As a patient, remember to put yourself first. Refusing to run yourself into the ground isn’t selfish. Sjögren's Warriors have compromised immune systems, which is invisible.
Randy K., 49 (diagnosed during mid-thirties)
I wish people understood that this complex disease affects both men & women of all ages. As a Sjögren’s patient, remember to stay informed and keep asking questions. Never assume that things can’t change.
Jaeden, 9 (diagnosed at 6)
My most difficult symptoms are body aches, dry mouth & muscle pain. The hardest part of living with Sjögren's is that people don’t understand when I need to take breaks.
Erin B., 34 (diagnosed at 24)
Sjögren’s means that outwardly I look normal but some days I’m so exhausted I can’t get out of bed, which isn’t an option as a mom. It’s hard when people don’t understand it’s not a “tired” you can fight through by having some coffee or taking a nap.
Priscilla A., 43 (diagnosed at age 41)
Sjögren’s means that my disease cannot be treated by just taking a pill.
Allison, 24 (diagnosed at 23)
My most difficult Sjögren's symptoms are brain fog, fatigue and constant aches & pains. I wish people knew that living with this disease means my smile hides more than you know.
Leah G., 38 (diagnosed at age 35)
Sjögren's means I live with constant fatigue, joint/ muscle pain, and brain fog. I wish people knew to be patient me. I only complain when I'm feeling really bad so know that if I'm complaining, it means I feel terrible.
Sally V., 69 (diagnosed at age 62 after 20 years of undiagnosed symptoms)
Most of my body has been affected by this disease. My best tip for Sjögren's patients is to allow yourself rest but don’t give up. And thank you to the SSF! The Foundation has changed the whole outlook for patients.
Ashlyn A., 23 (diagnosed at age 21)
My most difficult Sjögren's symptoms are living with cystic lung disease, low white blood cell counts & dry eyes.
I wish people knew that it’s not easy living with a chronic disease, but I’m still me. I have cysts in my lungs, but I won’t give them to you. I want to workout, but it’s hard sometimes with my breathing. I was able to have lung surgery & then get married four months later like nothing happened. I’m still me. I’m just living with Sjögren's.
Tamika L., 40 (diagnosed at 32)
I wish people understood that Sjögren’s can affect the entire body. Although this disease seems invisibles to others, don’t ignore symptoms. Stay educated & take charge of your health!
Click here to learn more about how to be your own best patient advocate by gaining a thorough understanding of Sjögren's and signing up as an SSF member to receive our patient newsletter, The Moisture Seekers.
Grace K., 18 (diagnosed at age 17)
Brain fog is one of my most difficult Sjögren's symptoms. I find myself constantly forgetting things & often stare off for long periods of time, but this disease does not define who I am. Eliminating gluten & dairy from my diet has helped me manage my symptoms.
Kelly P., 50 (diagnosed at 46 after 8 years of being misdiagnosed)
Sjögren’s means I live with fatigue, neuropathy, irritable bowel syndrome (IBS), and migraines. If you know someone with Sjögren’s, offer your time or lend a hand because while many symptoms are invisible, we still need support.
Kiana T., 30 (diagnosed at 23)
My most difficult Sjögren's symptoms are inflammation in my fingers, chronic pain throughout my body and brain fog.
Roger T., 50 (diagnosed at 48)
My most difficult Sjögren's symptoms are joint pain, burning muscles, dry eyes and dry mouth.
Sjögren's is often described as a disease that mostly affects women and causes dry eyes & mouth, but people don’t realize it also affects men and a person’s whole body. I have difficulty walking because of numbness/burning in my toes and legs.
Susan B., 63 (diagnosed at 60)
I wish people knew that even though I’m still active, I often don’t feel well because of Sjögren's fatigue, pain & dryness. While I don’t want to seem like I’m complaining to family & friends, I know not talking about my health perpetuates their misunderstanding about the disease.
Remember to talk about Sjögren's in your life & connect with other patients who understand living with this disease.
We hope you will connect with the SSF by becoming a member & receiving our newsletter (https://www.sjogrens.org/home/get-connected/become-a-member) or joining our online community SmartPatients (https://www.smartpatients.com/partners/ssf).
Keri F., 41 (diagnosed at 39)
My most difficult Sjögren's symptoms are neuropathy, dry throat, dry mouth & fatigue. I wish people knew how different one day can be from the next when living with this disease. Feeling “ok” enough to put makeup on can be a victory.
Remember to take the to care for yourself. It makes living with Sjögren's a little less hard
Grace T., 13 (diagnosed at 9)
My most difficult symptoms are dry red eyes, joint pain, neuropathy & dryness. I wish people knew that Sjogren’s is a serious disease that is often underestimated.
Cleana M., 45 (diagnosed at 30)
My three most difficult Sjögrens symptoms are joint pain, peripheral neuropathy & difficulty swallowing.
Ray H., 54 (diagnosed at 44)
I wish people understood that men can also be diagnosed with Sjögren’s. My most difficult symptoms are dry mouth, dry eyes, peripheral neuropathy & fatigue. My best advice is to pace yourself, be balanced with commitments & remember that it’s ok to say “no”.
Natasha G., 28 (diagnosed at 25)
My most debilitating Sjögren's symptoms are total body inflammation, autonomic dysfunction & widespread pain. Remember to advocate for yourself. I started having symptoms in high school but because of my age, no one even considered this disease. I had to advocate for myself to be tested ten years later. With doctors, friends & family, remember to always advocate for yourself in order to get the best quality of care & support.
Amy R., 50 (diagnosed at 39)
Sjögren's means living with joint pain, fatigue, migraine headaches & brain fog, but the most frustrating part of this disease, is trying to find your new normal when you look normal but don't feel that way! I wish people understood how debilitating Sjögren's can be. Some days I can barely drag myself out of bed because of joint pain & headaches.
Stephanie B., 29 (diagnosed at 20)
I’m currently pregnant with my second son. I had no idea during my first pregnancy that Sjögren’s can cause fetal block. I’ve had a few flare ups already & am having weekly fetal echo exams, but I’m thankful for my husband, team of doctors & support group.
I wish people knew that Sjögren’s is typically a progressive disease that will get worse with time, which scares me.
Rebecca B., 37 (diagnosed at 32)
I wish more people understood the seriousness of this complex disease. Last month I was diagnosed with MALT lymphoma of the salivary gland. If you are diagnosed with Sjögren’s, know you are not alone in this fight!
Amy C., 42 (diagnosed at 36)
I wish people understood that Sjögren’sis all encompassing. I have become so much better at managing this disease in the last 6 years, but I know I have a long way to go. While Sjögren’ssucks, life doesn’t have to. I keep moving because I am strong, and I have Sjögren’s.
Click here to learn more about the significant physical & emotional burdens of Sjögren’s.
Cameron P., 15 (diagnosed at 14)
My most difficult Sjögren’s symptoms are joint/muscle pain, fatigue, chronic meningitis & multiple organ involvement requiring hospitalization. I wish people understood that this is NOT just a disease of women over 40. My best tip is to listen to your body, take your time & a positive attitude is key!
The SSF sponsors over 65 groups throughout the United States & Canada. In addition to our local support groups, the SSF supports 3 special support groups: patients under 40, men with Sjögren’s & pediatrics. Click here to learn more about Sjögren’s support groups.
Maria G., 39 (diagnosed at 28)
My three most difficult Sjögren's symptoms are dry mouth (including swollen gums & sore throat), brain fog & muscle pain.I wish people understood that many symptoms of this complex disease cannot be seen, like extreme fatigue. A good diet, exercise routine & mediation has helped me but there’s no cure or single treatment for this disease.
Darolyn S., 34 (diagnosed at 27 after being misdiagnosed since her teenage years)
My most debilitating Sjögren's symptoms are neuropathy, chronic hives, unpredictable flares, fatigue & a low white blood cell count causing me to be more susceptible to infections.
When I’m feeling my worst, my initial desire is to disconnect from other but my bet tip for living well with this complex disease is to work at maintaining your close relationships. While it is difficult for others to understand this often-invisible disease, my hope is that more friends & family members of patients try to learn more about Sjögren's.
To end Sjögren’s Awareness Month, the SSF is premiering the first episode of “Exploring Sjögren’s” a new YouTube series to explore the daily lives of patients, while we also discuss the work being done to help conquer the complexities of this disease.