Daily Posts: 30 Faces for Sjögren's Awareness Month

April is Sjögren's Awareness Month and using our 2018 campaign, “30 Faces for Sjögren’s Awareness Month,” we hope to help others visualize the vast impact of the disease.  

Day 23

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SydneyAnne S., 65 (diagnosed at 38), Grandmother

Having this disease for nearly 30 years, I have suffered from debilitating arthritis, various dry eye issues, lost all my beautiful teeth and was diagnosed with cancer. Everything has been linked back to my Sjögren’s, but the hardest thing is having people look at you with a question mark in their eyes and wondering if it’s all in my head. Education and awareness is key

Click on the link below to learn more about Sjögren’s & Lymphoma.


Day 22

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Jeannine V., 27 (diagnosed at 20), Soldier

My three most difficult Sjögren's symptoms are dry eyes, breathing/ lung complications and dry mouth. I wish people were more informed about this disease.

Click here to learn more about Sjögren’s Pulmonary Manifestations. 

 


Day 21

 

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Ines F., 43 (diagnosed at 37), Chef

I wish people knew that Sjögren's is so much more than dryness. It’s a debilitating disease that affects the whole body. But I won’t let Sjögren’s control my life!

Click here to learn more about how Sjögren’s affects the body.


Day 20

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Michelle V., 33 (diagnosed at 33), Social worker

I’ve lost a lot of weight since being diagnosed with Sjögren's, which has caused me to have low self-esteem/ poor body image, and the combination of my symptoms makes me feel less than. I wish people knew that this disease causes good days and bad days.

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


Day 19

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Patricia L., 63 (diagnosed at 59), Retired Educator

I constantly worry about what’s to come with my Sjögren’s. Are my current symptoms the only ones I’ll have? How much more serious will my disease progress? Are there other manifestations that have not yet been detected? What will the future hold for my children and grandchildren if they’re diagnosed with Sjögren’s?

Click here to learn more about how to help the development of new Sjögren's therapeutics by participating in a clinical trial.   


Day 18

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Stephanie G., 32 (diagnosed at 19), Healthcare Professional

I was diagnosed when I was pregnant with my daughter, who is now 11, and the doctor's found she had congenital heart block (CHB). There’s a connection between Sjögren's/ Lupus and children born with CHB, which is why I was tested for those antibodies. Being born with CHB means that one day my daughter will need a pacemaker for her safety and overall health.

Click here to learn more about how to receive our newsletter and take control of your health by becoming an SSF member.


Day 17

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Stacy R., 34 (diagnosed at 34), Business Owner

Some days it’s hard to even get out of bed. Sjögren's is often invisible, so people don’t realize how debilitating it can be. My best tip is to take care of yourself and be honest with your doctors! If you are living with pain, ask for help to find what your best treatment option is. 

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


Day 16

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AJ, 13 (diagnosed at 7)

I don’t know how my Sjögren’s will progress in the future, which is why I need to be an advocate; for myself and others who are living with the unknown because of this disease.

Click here to learn more about how AJ is standing up for Sjögren’s at the Philadelphia Walk. 


Day 15

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Nanako M., 57 (diagnosed at 42), Retired

My best Sjögren’s tip is to not let this disease take you down! Set realistic expectations on what you can accomplish but continue to go after your dreams and adventures.

Click here to learn more about Sjögren’s from the SSF blog.


Day 14

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Joyce G., 41 (diagnosed at 37), Mom

I want people to know that Sjögren’s is real and a very serious disease. It takes a toll not only on the patient, but its effects are also felt by family and friends. My three most difficult symptoms are chronic pain, chronic fatigue and sensitivity to sunlight.

Click here to learn more about sun sensitivity and Sjögren’s. 


Day 13

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Deb H., 65 (diagnosed at 60)

Even though I don't look sick, every day I live with this debilitating disease. My best #Sjögrens tip is to try and be your own best advocate because it can be very challenging to find physicians who are knowledgeable about this complex disease. 

Click here to view the SSF “Tracking Your Symptoms” worksheet.


Day 12

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Lauren G., 36 (diagnosed at 35), Creative Director

Some of my most difficult Sjögren's symptoms are reoccurring sinusitis, esophageal irritation, dry skin and brain fog, but the hardest part of living with this disease feels taboo to talk about. It is the added risks to pregnancy. While everyone’s Sjögren’s journey looks and feels different, know you are not alone! 

Click here to learn more about how you can help raise awareness of Sjögren’s this April.


Day 11

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Darlene R., 48 (diagnosed at 43)

My three most difficult Sjögren's symptoms are daily fatigue, chronic pain and autonomic dysfunction of my heart. I wish people understood the frustration of seeing multiple physicians in search for the one who truly understands the totality of this disease on ones’ mind, body and spirit.   

Click here to learn more about the significant physical & emotional burdens of Sjögren’s.


Day 10

Erica H., 32 (diagnosed at 31), Mom and Photographer

My best Sjögren's tip is communication. Communication with yourself about how you're truly feeling and communication with your family about specific things you need. And most importantly, communication with your doctor. No one can advocate for your care better than you. Our doctors need to know how we are feeling and what we hope our future looks like while living with this disease.

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


Day 9

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Grace T., 12, (diagnosed at 8)

My three most difficult Sjögren's symptoms are joint pain, fatigue, and nerve pain. I wish people knew that this disease exists.  

Click here to learn more about Pediatric Sjögren’s.

 


Day 8

 

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Joan F., 22 (diagnosed at 20 but symptom onset at age 10), Teacher

I wish people knew that Sjögren’s can affect people of all ages and in some cases is life-threatening. My best tip is to not let this disease control your life but also do not ignore your symptoms. 

Click here to learn more about Sjögren's.   


 

Day 7

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Melissa P., 42 (diagnosed at 37), Full-time Manager

My three most difficult Sjögren's symptoms are joint pain, fatigue and peripheral neuropathy. I wish people would realize that just because we don't look sick doesn't mean that we are doing well. We must turn our pain into purpose- KeepFighting!

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

 


Day 6

 

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David S,. 52 (diagnosed at 48), Consultant

My three most difficult Sjögren's symptoms are unpredictable fatigue, dry eyes, and digestive problems. I’ve found that acceptance of the disease helps to reduce stress. 

Click here to learn more about gastrointestinal (GI) complications and Sjögren's.

 


Day 5

 

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Erin W., 32 (diagnosed at 32), Physician Assistant

Having recently been diagnosed with Sjögren’s, and unknowingly struggled with the disease for years, I am now intimately aware of its widespread effects on the body. This disease is isolating and devastating. My hope is for further education, research, and awareness so that people like me can get the help they need to live fuller, healthier lives.

Click here to learn more about how you can support the SSF and our mission by becoming a member.


Day 4

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Christina G., 45 (diagnosed at 40)

I lost my upper teeth to this disease in my 30s, before I was diagnosed. The Sjögren’s dry mouth progressed fast for me. I had my first tooth pulled about two years after I started experiencing severe dry mouth. Six years after that tooth being pulled, I had to remove all my upper teeth. 

Click here to learn more about the SSF Clinical Practice Guidelines “Caries Prevention” for Oral Management in Sjögren’s Patients.


Day 3

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Joann C., 65 (diagnosed at 54), Counselor

I try to live each day to my fullest because I am not defined by my disease. Help others understand what to expect by talking about your Sjögren’s and don’t be afraid to talk to medical professionals about the disease. There are still many who don’t know about Sjögren’s - let’s help educate them!

Click here to learn more about Sjögren's.


Day 2

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Ellen B., 26 (diagnosed at 25), Critical Care Registered Nurse

During my most severe Sjögren's flare, when I was diagnosed, I had life-threatening swelling in my face, lips, and throat with a red rash all over my body. I was unable to walk at times because of weakness and joint pain. Sjögren's can be extremely severe, scary, and at times life-threatening. To protect my health, I've had to learn to say no and set boundaries. 

Click here to learn more about a Sjögren's flare.


Day 1

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Melissa F., 42, (diagnosed at 36), Stay at home mom (Former RN)  

I wish people knew that Sjögren's is more than dry eyes and dry mouth. It has affected every organ in my body. The skin being the biggest one, and the heart being the most important one. 

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