Today is World Sjögren's Day

World Sjögren's Day is celebrated annually on July 23rd as a day to spread awareness about this life-altering disease while also raising valuable funds for Sjögren's research, education, and advocacy.        
         
It’s a day where patients are encouraged to use their voice to educate those around them and to help spread the message that Sjögren's is a serious, systemic, and prevalent disease. And it’s meant to put a face on the millions of people living with Sjögren's or who suffer with symptoms but who are not yet diagnosed.          
         
Sjögren's Syndrome is a systemic autoimmune disease (involves the entire body) that occurs when the body attacks its own healthy cells. It occurs most frequently with women and is most commonly associated with dry eyes and mouth. The most disabling symptom is overwhelming chronic fatigue.        
         
Symptoms include:        
Dry eyes, mouth, nose & skin        
Corneal ulcerations        
Recurrent sinusitis        
Mouth sores        
Swollen/painful salivary glands        
Vaginal dryness, vulvodynia (women only)        
Chronic prostatitis (men only)        
Nose bleeds        
Dental decay        
Difficulty with chewing, speech and taste
Difficulty swallowing       
Overwhelming chronic fatigue          
Fatigue flares        
Neurological problems (concentration, memory loss, brain fog, headaches)        
Joint pain        
Muscle pain        
Heartburn, GERD, reflux, esophagitis        
Stomach upset, gastroparesis, autoimmune pancreatitis, IBS, autoimmune gastrointestinal dysmotility       
Peripheral Neuropathy        
Arthritis       
Abnormal liver function tests        
Interstitial cystitis        
Can cause Raynaud’s disease in some cases        
Can cause lymphoma in some cases        
Can cause lung diseases, pneumonia        
Can cause chronic active autoimmune hepatitis          
         
I plan my days according to how I feel when I wake up in the morning and I’ve had to adjust my lifestyle around my fatigue. I take multiple medications daily.          
         
This past June I had genetic testing, 4400 known genomes, and I’ll get the results at the end of September (it takes 12 weeks). I’m fortunate. Not everyone has health insurance that will pay for genetic testing.          
         
I’m also fortunate to have an excellent Immunologist, Rheumatologist, Neurologist, Gastroenterologist, Pain Management Doctor, Urologist, GYN, Neuro-Ophthalmologist, dry eye specialist (Ophthalmologist), eyelid specialist (Ophthalmologist/surgeon), Orthopedic foot surgeon, hand surgeon and knee surgeon (same practice) and an excellent therapist and Psychiatrist (even though I don’t take psych meds). I’d rather not have a ton of specialists, but I thank the universe every day that they are available to me because it’s necessary.        
         
Knowledge is power. Not only for myself and others suffering with this disease, but for everyone. We don’t always look sick. Many of us have handicapped parking tags, or wheelchairs, scooters, walkers and canes. It’s a pet peeve, but the next time you decide to scream at someone because they get out of their car and it’s parked in a handicapped space and they look “normal,” please think twice. We never know what someone is going through just because they don’t look sick.          
         
I don’t look sick.