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Living With Sjögren's Syndrome

My mother was diagnosed and lived with Sjögren’s Syndrome all her life. I wrote and presented this paper in high school. The lack of Oxford commas frighten me.

Living with Sjögren’s Syndrome
18 December 1987

Do your eyes burn, tire easily or feel as if there is something in them? Do your eyes feel dry and are they often red and itch? Do you need to drink water often while talking? Are your tongue and gums frequently sore and cracked? Have you noticed any swelling around or under your ears/jaw?

A common definition of Sjögren’s Syndrome is a “chronic autoimmune and inflammatory disease characterized by diminished lacrimal and salivary gland secretion (sicca complex), resulting in dry mouth and dry eyes.” The term ‘autoimmune exocrinopathy’ (the drying out of moisture glands) is proposed to describe a more detailed and expanded definition. (Talal, Norman. 19-20)

The main symptoms are decreased production of secretions from the tear and salivary glands, as noticed in keratonjunctivitis sicca (KCS, dry eyes) and xerostomis (dry mouth). Mucous-producing glands affected are: the nose, pharynx, esophagus, trachea, lungs and any other mucous-producing membranes affected by reduction of glandular secretions. Extraglandular functions affected are: the skin spleen, liver, kidney, muscles, lungs, nerves, the brain, blood vessels and the joints. The symptoms of the eyes are: accumulation of thick, ropy strands at the inner cantous, particularly upon awakening; photosensitivity; eye fatigue, corneal ulceration, vascularization; and opacification, followed rarely by perforation. Symptoms of the mouth are: distressing oral insufficiency and/or adherence of food to buccal surfaces; fissures or ulcers on tongue, buccal membranes, or lips, particularly at the corners of the mouth; of liquids, particularly at meals; and, red dry tongue. Other symptoms are: non-deforming arthritis in joints; dry nose, throat, hoarseness, or mild bronchitis; stomach inflammation, constipation, and pancreatitis.

There are several ways of diagnosing for Sjögren’s Syndrome. Careful examination of the eyes, including measurement of tear production. Stimulation with lemon juice will help determine saliva production in the mouth. X-ray exams of salivatory (parotid) glands and cells from the lips to determine whether or not lymphocytes are present in those glands. Diagnosis can be made by evidence of sicca without other signs of connective tissue disease, enough to at least diagnose primary Sjögren’s Syndrome (discussed below) by two out of three of the following: (1) characteristic lymphocytic infiltrates (focus sore on labial salivatory gland biopsy), definite KCS, and associates extraglandular connective tissue or lymphoporliferative disorder. Blood counts can be used, often showing anemia and infrequently a low white count. Schrimer test (whetting of the eyes) and minor salivatory gland biopsy can also be used. The slit lamp test, lysozyme agar diffusion test (not routine), rose brngal staining, and tear breakup time are also popular diagnosing procedures.

The cause of Sjögren’s Syndrome is unknown. It is believed, however, that genetics and viruses may play a part.

There is no known cure for Sjögren’s Syndrome. Primary Sjögren’s Syndrome (1SS) contains the symptoms of KCS and xerostomia. People with 1SS have more severe problems, most notable bulky enlargement of glands around face, jaws and neck. There is higher kidney involvement, usually more frequent urination. There is also usually an underactive thyroid, as demonstrated in sluggishness, feeling cold, constipation and deepening of voice.

Secondary Sjögren’s Syndrome (2SS) has the symptoms of 1SS, but also have some type of connective tissue disease, such as rheumatoid arthritis, lupus, and polymyocitis. There may also be thickening and inflammation of arteries (arteritis nodosa). There can be joint pain, primarily in the fingers, wrists, and knees for a significant part of the day. There may be joint stiffness for an hour or more in the morning. Extreme coldness, pain, and color change may occur in the fingers and toes. Distinct rash can occur on cheeks, accompanied by hair loss, both of which could worsen with exposure to the sun. A “genetic marker” has been found in people with 2SS: HLA-DR3; however, presence of this marker does not necessarily mean that a person will contract 2SS.

The treatment of Sjögren’s Syndrome is dependent upon the symptoms of each individual. Treatment is aimed at systemic relief. For the eyes, artificial tears and/or eye ointment soothe and lubricate them. Moisture-retentive soft contact lenses can serve as eye bandages; however, frequnt lubrication is needed to reduce the risk of infection. Goggles and eye shields help retain moisture and are hepful while sleeping. Humidifiers are useful – the symptoms of sicca are substantially reduced. In severely advanced cases, punctal occlusion – a surgery to close the drainage canals to help retain moisture – may be necessary.

There are several treatments available for the mouth. Oral lubricants and a diet of soft foods is recommended; avoid the use of sugar whenever possible, which contributes to cavities. Also drink plenty of liquids to keep the mouth moist.

Sjögren’s Syndrome was first recognized in the late 1800’s-1920’s. In 1933, Swedish ophthalmologist Henrik Sjögren wrote a report about the connection between the sicca complex and the connective tissue diseases, which were described in a triad; dry eyes (KCS), dry mouth (xerostomia), and rheumatoid arthritis.

It must be concluded that Sjögren’s Syndrome is one of the most common and least diagnosed autoimmune diseases.

Works-Cited

  • Howard, Paul F. MD. Sjögren’s Syndrome – An Overview. Published by Sjögren’s Syndrome Foundation, Inc.
  • Litton, Bonnie and Steve. The Effects of Sjögren’s Syndrome Other Than Eye and Mouth. Sjögren’s Syndrome Foundation, Volume II, Issue 2.
  • Michelson, Paul E. MD, FACS. Living With Dry Eyes.
  • Sjögren’s Syndrome Foundation, Inc. The Moisture Seekers. SSF. Volume IV, Issue 3.
  • —. Response letter. 22 November 1987.
  • —. SSF fact sheet. 22 November 1987.
  • —. Your mouth feels parched. Twin Cities: SSF
  • Talal, Normal MD. How to Recognize and Treat Sjögren’s Syndrome. PA Drug Update. May 1984.
  • Tarail, Jane. Sjögren’s Syndrome: A Dry-eyed Diary. American Journal of Nursing. March 1987.

They

They

They say inflation

is getting worse.

They say things are

getting out of hand.

They say we should

tighten our belts.

If we try

we can win.

They say we can.

They say many people

are out of work.

They say smokers should

try to quit today.

Morale, in general,

is going downhill.

Pollution is

killing us,

They say.

Did you ever

stop to wonder?

Give it a thought,

a moment or two.

About how much

they have to say?

About how little

they really do‽

They say the world

is ending.

It just might

end today.

So they carry signs,

they look so sad.

What strange people

are they.

They think they

know it all.

Then even told us

God was dead.

They soon discovered

they were wrong.

No one listened

or believed,

What they said.

Now who are they?

Would you like to know?

The anonymous they?

Who can they be?

Is it possible

they are us?

Are they

sometimes you?

Sometimes me?

They tend to say

so many things.

Some are good,

most are bad.

Yet I cannot believe

I am one of they.

Because they usually

get me angry,

And make me mad!!!

brg
1-75

They (alternate version)

They say inflation

is getting worse.

They say things

are getting out of hand.

They say we should

tighten our belts.

If we try,

we can win.

They say we can.

They say too many people

are out of work.

They say smokers

should try to quit today.

Morale, in general,

is going down hill

Pollution

is killing us,

They say.

Did you ever

stop to wonder?

Give it a thought,

a moment or two.

About how much

they have to say?

About how little

they really do‽

They say the world

is ending.

It just might

end today.

So they carry signs,

they look so sad.

What strange people

are they.

They think

they know it all.

They even told us

that God was dead.

They soon discovered

they were wrong.

No one listened

or believed,

What they said.

Now who are they?

Would you like to know?

The anonymous they?

Who can they be?

Is it possible

they are us.

Are they

sometimes you?

Sometimes me?

They tend to say

so many things.

Some are good,

most are bad.

Yet I can’t believe

I’m one of they.

Because they usually

get me angry,

And make me mad!!!

brg
1-75

Come the daybreak, come the dawn (unfinished)

Come the daybreak, come the dawn
And you wake up all alone
But you felt that he’d go
Say goodbye to the oriole.

The meadowlark after dark
Will croon your blues away
He’ll trick you slow – soon you’ll know
He would never stay

Then the mighnight comes

A nightingale sings his song

And he sings it all alone

No one can touch him

No one would dare

For the nightingale

Can break you heart

Cause he don’t care

brg
undated

Blossoms, Blossoms Everywhere (unfinished)

Blossoms, blossoms everywhere
Springtime fragrance fill the air
Our hands touch and I find
Thoughts of love on my mind.

Strolling slowly through the park
A stifled sneeze in the dark
Wiping tears from your eyes
Hayfever needs no alibis

Pollen, pollen everywhere
Germinating spring’s fresh air.
Place you sweet hand in mine.
Love will keep ‘til summertime.

brg
undated