It’s hard to believe that it’s been a whole year since the last Sjogren’s Awareness Month. During this past year, every time I brought up the word Sjogren’s I never got one person who had heard of it. It’s so frustrating that I have to try and explain what Sjogren’s Syndrome is. I usually just say, it’s similar to Lupus. Then, they show me by their expression that they’ve heard of Lupus.
I think the main reason no one has heard of it is because the name is so awful. No one knows how to pronounce it and it’s a long and ridiculous word. Why couldn’t they name it something normal and reasonable. When I say the word Sjogren’s, people make a funny face. I know that they’ll never remember it.
Another ridiculous thing about Sjogren’s Syndrome is that doctors and even rheumatologists don’t think that it’s serious. They all seem to think that the only symptoms we have are dry eyes and dry mouth. And, they don’t think that sounds too bad. Sjogren’s Syndrome is much more than those two symptoms.
“Symptoms vary from person to person but may include:
- Neurological problems, concentration/memory-loss, dysautonomia, headaches
- Dry eyes, corneal ulcerations and infections
- Dry nose, recurrent sinusitis, nosebleeds
- Dry mouth, mouth sores, dental decay, difficulty with chewing, speech, taste and dentures
- A change in taste or smell
- Dry or peeling lips
- Dry or burning throat
- Swollen, painful parotid/salivary glands
- Difficulty swallowing, heartburn, reflux, esophagitis
- Recurrent bronchitis, interstitial lung disease, pneumonia
- Interstitial nephritis, renal tubular acidosis, glomerulonephritis
- Respiratory issues like shortness of breath, cough
- Stomach upset, gastroparesis, autoimmune pancreatitis
- Abnormal liver function tests, chronic active autoimmune hepatitis, primary biliary cholangitis
- Interstitial cystitis
- Irritable bowel, autoimmune gastrointestinal dysmotility
- Arthritis, joint/muscle pain
- Peripheral neuropathy, Raynaud’s
- Vaginal Dryness, vulvodynia
- Fatigue, vasculitis, lymphoma
- Inability to focus or ‘brain fog’
- Skin sensitivity to UV light ” (https://www.sjogrens.org/understanding-sjogrens/symptoms)
At this time, I actually have 14 of those symptoms. Many of them are invisible and invisible illnesses are often ignored. So many doctors think that my symptoms (above) are related to a case of Fibromyalgia or something else. I’ve quit bringing up all of this, but know that I really would do better with a different rheumatologist.
When you have Sjogren’s Syndrome, the doctors just try and treat the symptoms. The only “auto-immune disease” medicine I’ve been given is Plaquenil. This isn’t designed for Sjogren’s, but for Lupus. Doctors give it to us, because they don’t have anything else. We’re so ignored, we don’t even get a drug company to try and help us with a medicine designed for our specific illness.
If Sjogren’s attacks the organs, there are other medications that are much stronger and used to stop the attacks. These have serious side effects, but there are times when they must be used.
If I had tons of money, I would definitely spend money on Sjogren’s research. But, I guess if we all give just a little it will add up. Maybe someday our syndrome will be in a better place as far as research goes. Join me as I’ve joined the Sjogren’s Foundation.