Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Conquering the Complexities of Sjögren's

Posted on Fri, Apr 12, 2019

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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.


Day 1

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.” 

Click here to learn more about our April Awareness theme, Conquering the Complexities of Sjögren's.

Day 2

Jen Day 2

 

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.

Click here to learn more about our April Awareness theme, Conquering the Complexities of Sjögren's.

Day 3

Day 3 Randy

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.

Click here to learn more about the SSF & symptoms of Sjögren's.

Day 4

Day 4

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.

Click here to learn more about pediatric Sjögren's.

Day 5

Day 5

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.

Click here to learn more about fatigue and Sjögren's. 

Day 6

Pricilla Day 3 

Priscilla A., 43 (diagnosed at age 41)

Sjögren’s means that my disease cannot be treated by just taking a pill.

Click here to learn more about treatment options and coping methods with Sjögren's

Day 7

Day 7 Allison

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.

Click here to learn more about brain fog and Sjögren's.

Day 8

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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.

Click here to learn more about how to talk with family and friends about Sjögren's.

Day 9

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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.

Click here to learn more about symptoms of Sjögren's.

Day 10

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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.

Click here to learn more about Sjögren’s-Related Lung Disease.

Day 11

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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.

Day 12

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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.

Click here to view resources about chronic illness and diet, like “Grain Brain,” in the SSF bookstore.

Day 13

Kelly Day 13

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.

Click here below to learn more about headaches and Sjögren's.

Day 14

Kiana T Day 14

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.

Click here to learn more about chronic pain & Sjögren's.

Day 15 

Daty 15 Roger

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.

Click here to learn more about peripheral neuropathy and Sjögren's.

Day 16 

Yvette Day 16

Yvette Y., 42 (diagnosed at 28)
 
Sjögren’s means living with tooth decay, joint pain, fatigue and having to explain what your disease is to everyone. It’s discouraging to be in the ER and need to describe Sjögren’s to your doctors/nurses. My best tip is to keep talking about the disease. Our pain, our story connects us and that helps.
 
 
Day 17 
 
Day 17
 
Jeri J., 29 (diagnosed at 28)
 
My most difficult Sjögren's symptoms are extreme fatigue, dry mouth and dry eyes.
 
As a basketball coach, it’s hard to manage fatigue that can’t be “pushed through,” like the athletic world teaches. My best Sjögren's tip is to make boundaries and stick to them. The health risks of letting yourself get run down isn’t worth it.
 
 
 Day 18 Susan
 

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).
 

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Topics: April Awareness Month, #ThisIsSjögrens

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