Sjogren’s Syndrome is now

Sjogren’s Disease - A brief overview of what to expect if you or someone you love has been diagnosed. (Over a dry cracked background)

This disease is too often minimized as “dry eye’s and dry mouth” but if you’ve been diagnosed you know it’s so much more.

It can vary from mild to quite significant and all advice says early diagnosis and treatment are important for trying to prevent damage to major organs. Finding treatment plans and getting diagnosis however is not as easily done as it may seem. Stick with it it’s worth it!

“People with Sjögren’s disease are 44 times more likely to have a type of cancer called lymphoma. After 20 years of having Sjögren’s, close to one out of five patients will develop lymphoma.” - sjogrens.org

Common Symptoms

• Dryness (Eyes, Mouth, Nose, Throat, Skin, and Genitals)

• Joint pain, inflammation, and stiffness

• Muscle pain and weakness

• Brain Fog, Trouble concentrating, or remembering things

• Fatigue

• Numbness, tingling, pain, or weakness in hands and feet

• Balance issues

• Sleep Problems

• GI Issues

• POTS - Postural Orthostatic Tachycardia Syndrome

• And so much more

Doctors you should have: PCP, Rheumatologist, Ophthalmologist, Dentist, ENT

Doctors you may potentially need: Pulmonologist (lungs), neurologist (nerves), gynecologist, Nephrologist (Kidneys)

My personal advice:

Never stop researching! You have to become an expert in your body because the doctors just don’t have time to understand all of us, especially if you have other conditions so like so many of us.

Every day comes with unexpected symptoms and struggles so finding community that understands what you go through is incredibly important, I highly recommend finding a group or three on your chosen social media platform or checking for any local support groups. Even if you don’t interact it helps you feel less alone to see other people are going through the same things you are. Especially if those in your immediate support system may be struggling to comprehend everything.

If your doctor dismisses you, doesn’t listen, minimizes the effects on your life, or anything else to make you feel small… FIND A NEW ONE! It’s exhausting and so draining, financially, physically, and emotionally I know. But we can’t give up on ourselves, we need to demand the care we all deserve and keep going until we find it.