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).

Day 19
Day 19 K

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

Click here to learn more about Sjögren's reflux & your throat.

Day 20

Day 20 Grace

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.

Click here to learn more about this complex disease.

Day 21

Cleana M Day 11

Cleana M., 45 (diagnosed at 30)

My three most difficult Sjögrens symptoms are joint pain, peripheral neuropathy & difficulty swallowing.

Click here to learn more about swallowing medications with dry mouth. 

Day 22

Ray Day 22 

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”.

Click here to learn more about Sjögren's dry mouth.

Day 23

Day 23 Natasha

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.

Click here to learn more about how to be your own best advocate & take control of your health by receiving our newsletter & becoming an SSF member.

Day 24

Amy Day 24

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. 

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

Day 25

 Stephanie Day 25

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.

Click here to learn more about pregnancy & Sjögren's.

Day 26

Day 26

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!

Click here to learn more about lymphoma & Sjögren's.

Day 27 

Day 27 Amy

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.

Day 28

Day 28 Cam

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.

29

Maria Day 29

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.

Click here to learn more about diet & Sjögren's

Day 30

Day 30

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.

Click here to see the first episode on our new YouTube channel.

Exploring Sjögren's

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Topics: April Awareness Month, #ThisIsSjögrens

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