syndrome is not just dry eyes and dry mouth. I know that because both my
daughter and I suffer from the disease. I want to share our story to make
physicians in Louisville aware of Sjogren's syndrome
so that others can be diagnosed early and accurately after onset of symptoms.
In my case, I began to experience
fatigue so severe I couldn't get out of bed or even raise a pencil. Imagine
becoming sick at age 26 with joint pain, going from doctor to doctor and having
treatments that turned out to be unnecessary and surgeries that never helped. I
started to think I was crazy or a hypochondriac. I knew I was sick, but the doctors
just kind of blew me off.
In 2006, my right submandibular
gland swelled so badly that I ended up in the hospital. I had a stone lodged in
that gland. I became septic and would not respond to antibiotics. My ENT called
in an infectious disease specialist for more aggressive treatment. It was so
painful I couldn't even swallow my own saliva. My throat almost closed off. I
kept telling the nurse I knew I was going to die. I knew something was
seriously wrong because my husband is a physician and he stayed with me in the
hospital almost all night. It was later that he told me I could have died. I
had a PIC line put in and had to be on two different IV antibiotics for two
weeks every six hours around the clock.
My ENT wanted to get the infection
down before removing the gland. One month later, he removed the gland and had
it biopsied. Nothing was abnormal. One year later, the left gland began to
swell so badly that he had to remove it. Because the gland was so scarred, my
ENT suspected I had Sjogren's syndrome. However, the
pathology report showed chronic inflammation with no specific mention of Sjogren's.
I continued to have joint pain and
fatigue. It felt like I had the flu all the time. I couldn't even stand up in
the shower. In 2009, I lost my mother; in November 2010, the symptoms
associated with Sjogren's syndrome hit full-blown. I
finally got some positive tests. My husband said that biopsy specimens should
be kept for 10 years, so we called the pathologists
and asked for tissue confirmation to diagnose Sjogren's
syndrome. Both pathologists from 2006 and 2007 said the findings were consistent
with Sjogren's syndrome.
After more than 20 years, I finally
knew what was wrong with me. This disease is the second most common connective
tissue disease, with rheumatoid arthritis being the most common. I am hoarse
all the time because of the dryness in my trachea. My vision has gone from
20/20 to 20/80. I have to wear 3.75 cheaters to see at a distance. I can't see
the numbers on the phone; I just count the buttons by touch. I also have severe
neuropathy pain and joint pain. I have lost 30 pounds. On the average, my
weight was 118-124 pounds before this hit me. I used to do tae kwon do four or five
times a week as well as yoga. But when this hit me, it was like a thief in the
night. It took a lot from me.
syndrome is also hereditary; our 29-year-old daughter has it, too. Her problems
began with her autonomic nervous system. Her heart rate would go as high as 286
beats per minute. She would go to the ER to get a shot that would stop her
heart and return it to a normal rate. She was diagnosed with called POTS
(Postural Orthostatic Tachycardia Syndrome). We took her to the Mayo Clinic two
times and they couldn't fix the problem. That's when I started researching and
found that POTS could come from SJS. Now, she experiences the same dry eyes,
dry mouth and joint pain as I do.
Currently, the National Institutes
of Health are funding a study called the Sjogren's
International Collaborative Clinical Alliance to improve the diagnosis and
treatment of the disease. I traveled to Johns Hopkins on three days' notice to
participate. I flew to Baltimore on a Thursday night and was seen Friday
morning. I could have just gone to be treated at the Johns Hopkins SJS Center,
but I knew firsthand how important this research was. I underwent a painful lip
biopsy as part of my participation.
I want to keep some people from
getting so sick because they have not been diagnosed or they have been
misdiagnosed. SJS mimics multiple sclerosis,
amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), Parkinson's
disease and Alzheimer's disease. I also have become an ambassador with the Sjogren's
Syndrome Foundation to educate doctors so they can look outside the box.
Some key points I've learned are:
- Sjogren's syndrome
affects as many as 4 million Americans.
- Nine out of 10 people who develop Sjogren's syndrome are women.
- Most patients are diagnosed in their late 40s.
- It takes an average of seven years to properly
diagnose the disease from the time initial symptoms appear.
I hope the story of my long road to
diagnosis, even as a doctor's wife, demonstrates the
need for physicians to give careful attention to this terrible disease so that
we can treat the symptoms effectively and prevent the serious complications
associated with Sjogren's syndrome.
Note: Lisa Stege is
married to George C. Stege III, MD.
What Our Patients are saying...
losing weight had to be hard, boy was I wrong"
"Thank you Dr.
Stege, my daughter is a new person!"
keeping me from losing weight, don't let it keep you from being
"They helped me
realize being heavy was not my fault."
"I did it for
me, but the fact that everyone else noticed isn't bad either ."
"I lost the
weight but I didn't have to do it alone."