Headlines
As aired on WTNH Channel 8, February 23, 2005, 11 p.m.
Sjogren's Syndrome - A Mysterious Illness that Affects Mostly Women
By Jocelyn Maminta
(Farmington) – Up to four million people have it, but the autoimmune disorder known as Sjogren's Syndrome affects mostly women.
This common ailment is often difficult to diagnose.
Dry eyes, dry mouth and fatigue.
"I remember going to the doctor and the doctor saying 'you look great' and I felt miserable."
"These people will get rotten teeth in the whole mouth."
"I can't think about it everyday because if I do, I'll be a total cripple."
They are talking about a common disorder not so commonly known.
Sjogren's Syndrome is an auto-immune disease striking primarily post-menopausal women.
Dr. Ann Parke, UConn Health Center, says"It attacks the glands that have ducts."
Dr. Ann Parke at UConn Health Center is a leading investigator of Sjogren's.
"One of the features of a disease that attacks glands, the patient gets dry."
So patients rely on over the counter products for artificial tears, as well as water to keep the mouth moist, flush out bacteria and to help digest food.
Kathy Heimann says,"I had no idea what it was..."
Kathy Heimann has lived with Sjogren's syndrome for 23 years. She fights fatigue daily.
"I describe it: waking up like I used to feel when I went to bed at night. That kind of tired is how you start the day."
Everywhere she goes...
"I have my wrist support because I have carpal tunnel syndrome which is very common in Sjogren's."
Kathy carries with her an arsenal to battle Sjogren's symptoms.
Lip balm, a drink to quench her thirst and eyedrops are always within reach.
"Relationships and how having Sjogren's affects relationships."
That's the topic of this support group meeting which Kathy leads. Husband Fred attends.
"It's not obvious she has Sjogren's disease which makes it difficult for family members, for friends. She looks normal, why can't she do the things she wants to do," says Fred.
But it's not just family and friends.
"The doctors don't really understand. A lot of them just know the word Sjogren's."
Dr. Parke says it takes an average of 9 years for a diagnosis.
"If a patient comes in and they have arthritis, they don't think to tell you their mouth is dry and they take water everywhere because they don't tie those things together."
While there's now more information on Sjogren's, Dr. Parke admits many doctors are still not aware.
"I am better now than I was then partly due to medication and new things that have come out."
New medication and therapy are improving quality of life. However there is no cure for Sjogren's.
Dr. Parke says it appears certain women are genetically pre-disposed to Sjogren's and there's some evidence suggesting viruses could also produce this syndrome.
Patients with Sjogren's often deal with other illnesses such as lupus and rheumatoid arthritis.
For more information:
http://www.sjogrens.org/
http://www.nlm.nih.gov/medlineplus/sjogrenssyndrome.html