New Member saying Hi
- From: califchief@xxxxxxxxxxx (Califchief)
- Date: Tue, 05 Feb 2008 06:01:20 GMT
Babs wrote to ASA:
So, Hi!
I'm Babs, and I was diagnosed with Behcet's Syndrome in 2004.
I live in the UK with my hubby and two boys.
I'm new to Google Groups, so still finding my way round.
Is anyone else on here from the UK, and does anyone have BD???
Looking forward to getting to know everyone!
Babs xx
Welcome to ASA, although we're all sorry you had to come here.
I'm going to include some information I discovered about
Behcet's/Bechet's.
Bechet's Disease
* Overview
* What is it?
* What causes it?
* What are the effects?
* How is it diagnosed?
* Treatment options
* Who is at risk?
What is it?
Bechet's disease is a chronic condition involving inflammation of
arteries and veins throughout the body. It also causes painful ulcers
in the mouth and on the genitals, inflammation in parts of the eye,
arthritis and skin sores. It is found most commonly along what is known
as the "silk road" - eastern Mediterranean, Middle East and East Asia.
It is rare in the United States. Symptoms can usually be controlled with
proper medication, rest and exercise and many patients eventually will
enter a period of remission.
What causes it?
Most symptoms of Bechet's disease are caused by inflammation of the
blood vessels. It is thought that an autoimmune reaction, in which the
immune system mistakenly attacks and harms the body?s own tissues,
causes the inflammation. How a person develops this autoimmune disease
is not known. It is believed that abnormalities of the immune system,
perhaps inherited, make some people susceptible to the disease. Then,
something in the environment (possibly a bacterium or virus) triggers or
activates the disease in susceptible people.
What are the effects?
Bechet's affects each person differently; some will have mild symptoms
while others will have more severe disease. Symptoms can last for a long
time or may disappear in a few weeks. Different symptoms may occur with
each flare. More severe symptoms usually appear months or years after
the initial disease symptoms are noticed.
The five most common symptoms of Behçet?s disease are mouth sores,
genital sores, other skin lesions, eye inflammation and arthritis.
Disease may become more severe over time.
* *Mouth sores*: Aphthous [pronounced afthus] oral ulcers usually
are the first and most persistent symptom. They are identical to
the common canker sore; but in people with Bechet's disease the
sores tend to be larger and more numerous. They can occur on the
tongue and inside the lips and cheeks. They usually are very
painful, make it difficult to eat or swallow and typically
disperse in 10 to 14 days. Sores often recur and may leave scars.
* *Genital sores*: While less common, the genital sores are visually
similar to the mouth ulcers. They are often mistaken for herpes,
but they are not caused by the herpes virus. Ulcers on the vulva
or penis can be painful, but those inside the vagina, on the
cervix or scrotum may not be. The ulcers can leave scars. More
than half of people with Bechet's get genital ulcers.
* *Skin lesions*: Red, raised bumps or bruises may appear on the
legs and the upper torso. Sores may occur when healthy skin is
scratched or pricked. Alone, they are not distinctive because they
resemble common boils or acne.
* *Uveitis and retinal vasculitis*: Uveitis, when the middle or back
part of the eye becomes inflamed, can cause blurred vision and
sometimes pain and redness. Uveitis can result in vision loss or
complete blindness and must be treated immediately. Behcet?s
disease can also affect the retina, which is the light-sensitive
layer lining the inside of the eye. This is called retinal
vasculitis and if left untreated, can result in blindness. Eye
inflammation occurs in half of all people with Bechet's, more
often among men than women. It typically begins within two years
of the disease's first symptoms.
* *Arthritis*: Inflammation in the knees, ankles, wrists, elbows, or
hands causes pain, swelling, heat and redness of affected joints.
Inflammation caused by Behçet?s usually lasts for a few weeks and
does not result in permanent damage. About one-half of people with
Behçet?s develop arthritis.
In addition to those five common manifestations, the circulatory system,
central nervous system and digestive tract can be affected by Bechet's
disease.
* *Circulatory system*: Deep-vein thrombosis (blood clots in the
deep veins of the legs) is the most common vascular complication.
Pain, tenderness, warmth and swelling in the leg should be
reported to your doctor immediately. Aneurysms (balloon-like
swelling of an artery wall) may also occur.
* *Central nervous system*: Inflammation of the brain and the
meninges (membrane that covers the brain and spinal cord) can
result in stroke if left untreated. Fever, headache, stiff neck
and difficulty coordinating movement should be reported to your
doctor immediately.
* *Digestive tract*: Inflammation and ulceration throughout the
digestive tract can cause abdominal pain, diarrhea and bleeding.
These symptoms are similar to those of ulcerative colitis and
Crohn's disease, so careful evaluation is necessary.
How is it diagnosed?
Diagnosing Bechet's disease can be quite difficult because no test can
confirm that you have it. Your doctor will examine you and may run tests
to rule out other conditions that cause similar symptoms, such as
Crohn's disease and reactive arthritis. Because it may take several
months or even years for all of the common symptoms to appear, diagnosis
may take a long time. The presence of the following key symptoms will
help your doctor make a diagnosis:
* Mouth sores at least three times in 12 months
* Any two of the following symptoms:
o Recurring genital sores
o Eye inflammation with loss of vision
o Characteristic skin lesions (see the symptoms section for
description)
o Positive pathergy test. In this test, a doctor pricks your
skin with a small needle; one to two days after the test,
people with Bechet's disease may develop a red bump where
the skin was pricked. This reaction is not common among
patients in the United States, but if you do have the
reaction, Bechet's disease is likely.
A dermatologist may perform biopsies of mouth, genital and skin lesions
to help distinguish Bechet's disease from other disorders that cause
similar sores.
Treatment options
Although a rheumatologist (doctor specializing in arthritis and related
inflammatory diseases) will probably coordinate your care, you may need
to see several different specialists, depending on your symptoms.
* *Rheumatologist*: treats arthritis and related diseases;
coordinates care
* *Gynecologist*: treats genital sores in women
* *Urologist*: treats genital sores in men
* *Dermatologist*: treats skin and mucous membrane symptoms, as well
as genital sores in both sexes
* *Ophthalmologist*: treats eye inflammation
* *Gastroenterologist*: treats digestive tract symptoms
* *Hematologist*: treats circulatory system problems
* *Neurologist*: treats central nervous system symptoms
Doctors can use medicines to relieve pain, treat symptoms and prevent
such serious complications of Bechet's disease as blindness or
disability from arthritis. When treatment is effective, flares become
less frequent. While there is no cure for Bechet's disease, you may
enter a period of remission. For some people, treatment does not relieve
symptoms, and more serious symptoms and complications may develop. Most
likely a combination of treatments will ease your symptoms.
* *Topical corticosteroids*: Rinses and gels that contain
corticosteroids and anesthetics are used to treat mouth sores.
Creams and ointments are used for genital and skin lesions.
* *Dapsone*: This oral antibiotic may be prescribed to treat oral or
genital sores.
* *Corticosteroids*: Oral steroids may be prescribed to reduce pain
and inflammation throughout the body. They can be effective for
treating severe joint pain, skin sores, eye disease and central
nervous system problems. They are useful in early stages of the
disease and for treatment during an acute flare. They are not
generally used for long-term management of the disease.
* *Azathioprine*: This immunosuppressant (a medicine that controls
an overactive immune system) is used to treat uveitis
(inflammation of the inner part of the eye), aphthous oral ulcers,
arthritis and deep vein thrombosis. It may improve long-term
prognosis.
* *Chlorambucil or cyclophosphamide*: These immunosuppressants are
used to treat uveitis and meningoencephalitis (inflammation of
the brain and lining of the brain and spinal cord).
* *Cyclosporine*: This immunosuppressant is used to treat uveitis
and other uncontrolled symptoms.
* *Colchicine*: This medicine reduces inflammation throughout the
body and may be used to treat arthritis, skin symptoms, and
aphthous lesions.
* *Methotrexate*: This medicine suppresses the immune system and
reduces inflammation throughout the body and can be used to treat
any uncontrolled symptoms.
* *Combination therapy*: If a single one of these treatments does
not control your symptoms adequately, your doctor may try
different combinations of them.
* *Surgery*: If you develop an aneurysm (balloon-like swelling in
an artery wall), surgical treatment will be necessary.
In addition to medical treatment, it is important for people with
Bechet's disease to balance rest and exercise in their lives. When
joints are warm and swollen, rest will help settle the disease.
Unnecessary activities should be avoided, and adequate sleep is
essential. A nap or relaxation period each day may be helpful. And
although it's important to reduce activity, it's also important to
maintain joint mobility. This can be accomplished by doing
range-of-motion exercises, light exercises designed to help reduces
stiffness and keep joints flexible. Moderate exercises when symptoms
abate can include walking and swimming.
Who is at risk?
Bechet's disease is most common along what has been called the "Silk
Road" - countries of the eastern Mediterranean, the Middle East and
East Asia. It is not as common in the United States and other Western
countries. The disease occurs primarily in young adults; the mean age
at onset is 25 to 30 years. Women are more likely to be affected than
men. However, men and young people (15 to 25 years old) tend to have
a more severe form of the disease than women and older people.
.... How do I spell "relief"? E-X-L-A-X.
___ Blue Wave/QWK v2.12
.
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