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1. What is lupus?
- What does autoimmune
mean?
- What is inflammation?
- What happens in autoimmune
diseases like lupus?
- Where did the name come from?
- Who gets lupus?
- What are the symptoms of lupus?
2. Different kinds of lupus
3. Can you catch lupus?
4. Is lupus a fatal disease?
- Death in lupus, what
is it due to?
5. Cancer
- Is lupus a form of cancer?
- Are people with lupus more
likely to develop cancer?
- Cancer treatment in lupus,
any special considerations?
6. AIDS and lupus, are they alike?
7. Lupus anticoagulant
- Does the lupus anticoagulant
mean I have lupus?
- Can you have antiphospholipid
antibodies and not lupus?
- Can you have antiphospholipid
antibodies and not have related
symptoms?
8. MS and lupus
- MRI findings in CNS lupus
9. Childhood lupus, prognosis
LUPUS OF THE SKIN
10. Symptoms of cutaneous lupus (lupus
of the skin, "discoid")
- Different types of rashes
- Diagnosis
- Specialist in lupus of the
skin treatment
11. Cutaneous (skin) vs systemic lupus
12. Hair loss
13. Make-up
14. Hives and burning sensation
15. Photosensitivity
DRUG-INDUCED LUPUS
16. Drug-induced lupus
CAUSE
17. What causes lupus?
18. Is it hereditary?
- Where is genetic research
being done?
19. Can I have my children tested?
20. What can trigger lupus?
- Is stress related?
- Are flares related to hormones?
- Are there medications to avoid?
- Does it occur more often in
certain geographical areas?
- Is lupus related to pollution
or toxic chemicals?
- Does something in the diet
cause lupus?
21. Silicone breast implants
- Any connection with lupus?
- If removed, will my symptoms
improve?
22. Aspartame- artificial sweetener
DIAGNOSIS
23. Is there a test for systemic
lupus?
24. Why is SLE so difficult to diagnose?
- How is it diagnosed?
- The ANA test - used as a screening
test
25. Confusion about diagnosis
- I have all the symptoms,
but the Dr. says it is not lupus!
- Early as possible diagnosis
- Can anything be prescribed
to relieve the pain if I'm not diagnosed
- Borderline ANA
- Positive ANA, not lupus, but
a CONNECTIVE TISSUE disease
- Negative ANA, not lupus, can
I have lupus and a negative ANA?
- What kind of doctor can diagnose
lupus?
- If I am in the process of
developing lupus, can I do anything to slow its
development?
- Positive ANA and fibromyalgia
LIVING WITH LUPUS
26. I have lupus. Are there any do's
or don'ts regarding:
- Diet
- Vitamins
- Exercise
- Fatigue
- Sleep
- Medications
- Work schedule
27. How to recognize a flare
- When to call the doctor
- Flare, how long will it last?
- Persistent flare without a
remission
28. What can I expect in the future?
Will I:
- Be able to have a family?
- Be able to continue working
full-time?
- Live long enough to see my
children grow up?
- Become crippled and end up
in a wheelchair?
29. Pain management
30. Dental Fillings
31. Hair dyes
32. Can lupus cause memory problems?
TREATMENT
33. Is there a cure for lupus?
34. How is lupus treated?
- I don't want to go on prednisone.
What else can I take?
- Weight gain brought on by
prednisone?
- Herbs and Vitamins?
35. Where is the BEST place to go for
diagnosis and treatment?
ALTERNATIVE MEDICINE
36. Massage
37. Acupuncture
38. Alternative treatments
RESEARCH
39. Research
- Is there any research being
done on lupus?
- Where is research being done?
- Where does the NIAMS lupus
research take place?
- What do we now know as a result
of NIAMS supported research?
- Are there any studies on the
use of estrogen in lupus?
- NIAMS Registries for Lupus
and Lupus Related Conditions
- NIAMS/NIH budget information
- Does the Lupus Foundation
of America do research?
- How do I find out more about
the LFA's Research Grant program?
- How close are we to a cure?
WORK/INSURANCE/DISABILITY
40. Is lupus included in the Americans
with Disabilities Act (ADA)?
41. Is there a list of insurance companies
that cover lupus?
42. Is financial assistance available?
43. Social Security Disability
- Applying
- Definition of disability
- Eligibility
- Not eligible, what then
- Difficulty in getting disability
- Denied benefits, what next
- Attorneys specializing in
disability law
If you have questions that are not covered here or
elsewhere in this site,
Contact
LFA
FREQUENTLY ASKED QUESTIONS ABOUT LUPUS
1. What is lupus?
Lupus is a chronic (long-lasting) autoimmune disease
in which the immune system, for unknown reasons, becomes
hyperactive and attacks normal tissue. This attack results
in inflammation and brings about symptoms.
What does autoimmune mean?
Literally it means immune activity directed against
the self. The immune system fights the body itself (Auto=self).
In autoimmune diseases, the immune system makes a mistake
and reacts to the body's own tissues.
What is inflammation?
Literally it means setting on fire. It is a protective
process our body uses when tissues are injured. Inflammation
helps to eliminate a foreign body or organism (virus,
bacteria) and prevent further injury. Signs of inflammation
include; swelling, redness, pain and warmth. If the
signs of inflammation are long lasting, as they can
be in lupus, then damage to the tissues can occur and
normal function is impaired. This is why the treatment
of lupus is aimed at reducing the inflammation. Reference:
see Facts & Overview, What is Lupus?
What happens in autoimmune diseases like lupus?
The immune system is designed to protect and defend
the body from foreign intruders (bacteria, viruses).
You can think of it like a security system for your
body. It contains several different types of cells,
some of which function like "security guards" and are
constantly on patrol looking for any foreign invaders.
When they spot one, they take action, and eliminate
the intruder. In lupus, for some reason and we don't
know why, the immune system loses its ability to tell
the difference between a foreign intruder and a person's
own normal tissues and cells. So, in essence, the "Security
Guards" make a mistake, and they mistakenly identify
the person's own normal cells as foreign (antigens),
and then take action to eliminate them. Part of their
response is to bring antibodies to the site that then
attach to antigens (anything that the immune system
recognizes as non-self or foreign) and form immune complexes.
These immune complexes help to set in motion a series
of events that result in inflammation at the site. These
immune complexes may travel through the circulation
(blood) and lodge in distant tissues and cause inflammation
there.
Where did the name come from?
Lupus is the Latin word for wolf. The term has been
associated with the disease since the 10th century,
though the reasons are unclear. Erythematosus means
redness. It is speculated that the name was given to
describe the skin lesions (sores), which typically are
red and perhaps at that time in history were thought
to resemble the bite of a wolf. Today we know that not
everyone with lupus has rashes or skin lesions, and
those who do would not say their rashes look anything
like a wolf bite.
Who gets lupus?
Lupus can occur at any age, and in either sex. Nine
out of ten people with lupus are women. During the childbearing
years (ages 15-44) lupus strikes women 10-15 times more
frequently than men.
People of all races can have lupus; however, African
American women have a three times higher incidence (number
of new cases) and mortality than Caucasian women. They
tend to develop the disease at a younger age and to
develop more serious complications. Lupus is also more
common in women of Hispanic, Asian, and Native American
descent.
The National Institute of Arthritis and Musculoskeletal
and Skin Diseases (NIAMS) has developed a strategic
plan for reducing health disparities. Lupus is included
as an area of research focus. Further information on
disparities in lupus and the strategic plan is available
at: http://www.niams.nih.gov/an/stratplan/stratplan.htm
What are the symptoms of lupus? Symptoms of lupus
vary widely depending on the individual case and the
form of lupus present. Most people with lupus do not
experience all of these symptoms. The list only serves
to alert people to clues that might indicate the presence
of lupus in an undiagnosed person.
- Achy or swollen joints
- Persistent fever over 100 degrees
- Prolonged, extreme fatigue
- Skin rashes, including a butterfly shaped rash
across the cheeks and nose
- Pain in the chest on deep breathing
- Anemia
- Excessive protein in the urine
- Sensitivity to sun or ultraviolet light
- Hair loss
- Abnormal blood clotting problems
- Fingers turning white and/or blue in the cold
- Seizures
- Mouth or nose ulcers lasting longer than two weeks
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2. Are there different kinds of lupus?
There are four forms of lupus including:
Cutaneous lupus erythematosus affects the skin. There
are many different types of cutaneous lupus including:
- Chronic cutaneous LE (CCLE) which is sometimes
called discoid.
- Subacute cutaneous LE (SCLE), and
- Acute cutaneous LE (ACLE).
See brochure:
Skin
Disease in Lupus
Systemic lupus erythematosus (SLE) attacks
multiple systems in the body which may include: the
skin, joints, lungs, blood, blood vessels, heart, kidneys,
liver, brain and the nervous system.
See Facts & Overview:
What is
Lupus?
Drug-induced lupus may develop after taking
certain prescription medications. Symptoms generally
disappear, within weeks to months, after the drug is
discontinued.
See brochure:
Drug-Induced
Lupus Erythematosus
Neonatal lupus, a fourth type, is a rare condition.
It is not the same thing as SLE. See FAQ
39 - Research.
Resource: "Lupus and Pregnancy" by T. Flint Porter,
MD, MPH and D. Ware Branch, MD. Lupus News, Vol. 20,
No. 5, Winter 2000.
Reference: see Facts & Overview,
Types
of Lupus
Lupus in Overlap
The majority of people with lupus have lupus alone.
Between five and thirty percent of people with lupus
report having overlap symptoms characteristic of one
or more connective tissue diseases. There are several
well-recognized overlaps that may affect people with
lupus including: lupus and rheumatoid arthritis (RA),
lupus and myositis, lupus and systemic sclerosis (SSc
or scleroderma), lupus and Sjogren's syndrome (SS).
Reference: see brochure,
Lupus
In 'Overlap' With Other Connective Tissue Diseases
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3. Is lupus contagious?
No, not even through sexual contact.
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4. Is lupus a fatal
disease?
Lupus is not a universally fatal disease. In fact, today
with close follow-up and treatment, 80-90% of the people
with lupus can expect to live a normal life span. Lupus
does vary in intensity and degree, however, and there
are people who have a mild case, there are those who
have a moderate case and there are some who have a severe
case of lupus, which tends to be more difficult to treat
and bring under control. For people who have a severe
flare-up, there is a greater chance that their lupus
may be life-threatening. We know that some people do
die of this disease and because of that we have a tremendous
amount of respect for the potential of this disease.
However, the majority of people living with lupus today
can expect to live a normal lifespan.
People frequently read in the literature that, 80-90%
of people with lupus live for more than ten years. Unfortunately,
this is often misinterpreted as- people with lupus live
for only ten years. Let us clarify this.
It is important to understand that the "10 years" does
not represent the number of years the person will live,
but rather the number of years involved in the study.
The studies followed patients with lupus from the time
of diagnosis for a period of ten years. At the end of
this research period they were able to conclude that
80-90% of the people enrolled were still alive. What
this study did not look at is what happened in year
11, 12, 15, 20 and so on. We know there are many people
who have been living with lupus for 15, 19, 25, 30 and
40 years. This is not a disease that is universally
fatal to all. The majority of people with lupus today
can expect to live a normal lifespan.
When people die of lupus, what do they usually die
of?
Overwhelming infection and kidney failure are the two
most common causes of death in people with lupus.
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5. Lupus and cancer
Is lupus a form of cancer?
No, lupus is not a form of cancer. It is an autoimmune
disease.
Are people with lupus more likely to develop cancers?
People with lupus are no more likely to develop cancer
than are people in the general population. However,
people who have received certain chemotherapy drugs
do carry the added risk of developing cancer sometime
later in life.
Are there any special considerations regarding treatment
of cancer in people with lupus? Cancer can be treated
in many ways; with surgery, radiation and/or chemotherapy.
All people with lupus who have surgery for cancer, should
be followed closely by their personal physician and/or
the rheumatologist to evaluate the activity of their
lupus throughout the course. For patients receiving
steroid therapy and surgical procedures, their steroid
dosage will have to be adjusted during the time just
shortly before surgery and then tapered slowly over
time after surgery. If a person is scheduled for surgery
and they take non-steroidal anti-inflammatory drugs
or aspirin, any of which may effect their clotting time,
these medications will need to be stopped prior to surgery
in order to minimize bleeding.
Chemotherapy usually doesn't present any particular
problems and can in turn treat active lupus.
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6. Is lupus like AIDS?
No. In AIDS (Acquired Immune Deficiency Syndrome) the
immune system is under active; it is deficient. In lupus
the immune system is overactive, producing large quantities
of antibodies. AIDS is contagious but lupus is not.
The majority of people diagnosed with AIDS die from
their disease whereas the majority of people with lupus
can expect to live a normal lifespan.
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7. Lupus anticoagulant
I was just diagnosed with the lupus anticoagulant.
Does this mean I have systemic lupus?
The lupus anticoagulant is classified as a type of antiphospholipid
antibody that was first detected in people with lupus.
It was later learned that many people who do not have
lupus, also produce these antibodies. In fact, according
to most studies, greater than 50% of the people who
have antiphospolipid antibodies, DO NOT have lupus.
So, just because a person has the lupus anticoagulant
antibodies does not necessarily mean that they have
or will develop systemic lupus.
There is a syndrome called the "Primary" Antiphospholipid
Syndrome (PAPS). This term is used to describe people
who do not have any signs or symptoms of SLE but produce
antiphospholipid antibodies such as the lupus anticoagulant
and/or anti-cardiolipin antibodies and experience problems
with blood clots, miscarriages, or thrombocytopenia
(low platelets). People with PAPS do not have lupus.
References: see brochures, Blood
Disorders in Lupus, and Antiphospholipid
Antibodies and Systemic Lupus Erythematosus
Is it possible to have antiphospholipid antibodies
and not have systemic lupus?
Yes. Although these antibodies were first discovered
in people who had lupus, it was later learned there
are many people who produce these antibodies who do
not have systemic lupus.
References: see brochures, Blood
Disorders in Lupus, and Antiphospholipid
Antibodies and Systemic Lupus Erythematosus
Is it possible to have antiphospholipid antibodies and
not have symptoms related to them, i.e. blood clots,
miscarriages or low platelets?
Yes. In fact, most people with these antibodies DO NOT
and will not have symptoms related to them.
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8. Lupus and multiple
sclerosis
I was diagnosed with MS 3 years ago and now my doctor
thinks I may have lupus. Is there a connection between
MS and lupus?
Multiple Sclerosis and lupus are both autoimmune diseases.
They are diagnosed and treated in very different ways.
There is no direct connection between the two, however,
lupus, known as a great imposter, can sometimes mimic
or imitate the symptoms of MS.
Reference: see brochure,
Systemic
Lupus and the Nervous System
My MRI from 3 years ago showed plaques. Is there
anything on the MRI of people with lupus of the nervous
system that is diagnostic for CNS lupus?
Diagnosis of CNS lupus is difficult as there is not
one specific diagnostic test to detect nervous system
involvement in lupus. The abnormalities seen on the
MRI scans are not specific for systemic lupus. In other
words, they could be due to a number of things. The
findings on these specialized tests and sometimes other
tests such as a brain wave test (electroencephalogram,
EEG) and a spinal tap have to be considered along with
clinical and laboratory findings in establishing a diagnosis
of CNS lupus. Reference: see brochure,
Systemic
Lupus and the Nervous System
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9. My child has lupus.
What is the prognosis?
The prognosis for children and adolescents with systemic
lupus has improved dramatically over the past twenty
years. With modern therapy, children do nearly as well
as adults.
References: see brochure,
Childhood
Lupus and
Contact
the LFA for articles on childhood lupus.
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LUPUS OF THE SKIN
10. What are the symptoms of cutaneous
lupus?
The symptoms of cutaneous lupus may include a variety
of different looking skin rashes, photosensitivity (where
exposure to ultra-violet light triggers a rash), and
sometimes ulcers on the inside of the nose or mouth.
Reference: see brochure,
Skin
Disease and Lupus
What do the rashes look like?
There are a variety of ways that cutaneous lupus rashes
can appear. The distinctive rash is called the "butterfly
rash," which is a rash that extends across the cheeks
of the face and the bridge of the nose. It can be flat
or raised; it can be bright red or it can be just a
mild blushing, light pink coloration to the skin. It
appears on the face in a pattern that looks like a butterfly;
the wings are beneath both eyes and the body of the
butterfly covers the bridge of the nose. Here is one
example of what a butterfly
rash may look like. (Photo source:
Dept. of Dermatology, University of Iowa)
Another classic rash found in cutaneous lupus is the
discoid rash. This rash is coin-shaped or oval
in shape, like a disk and it is seen on areas of the
skin that are exposed to sunlight. Discoid lesions (sores)
tend to be red and raised and become scaly. When they
heal they can leave behind a scar. These rashes can
also result in a change in coloring of the skin, making
the area around the lesion either lighter or darker
in color. These discoid lesions may appear on the scalp;
on the face in a butterfly distribution; or, as mentioned
earlier, in areas where the skin receives sun exposure,
especially, for example, the V of the neck. Discoid
lupus erythematosus (LE) lesions are usually painless
and typically do not itch. Here is one example of what
a discoid
rash may look like. (Photo source:
Dermatology Information System, Dermis.net)
Chronic cutaneous lupus may also appear in different
forms including:
- verrucous (wart-like) discoid LE
- lupus tumidus - elevated areas of red skin with
no scale or scarring
- lupus profundus - discoid skin lesions in conjunction
with panniculitis
- palmar-plantar erosive discoid LE - discoid lesions
on the hands and feet
Another type of lupus skin rash is classified as the subacute
cutaneous lesions. These are lesions characterized
by redness. They are also coin-shaped, very photosensitive
and they get worse when exposed to ultra-violet light.
These are lesions that do not leave behind scars, and
can appear over large areas of the body. People who have
subacute cutaneous lupus erythematosus (SCLE-a subset
of cutaneous lupus) may experience systemic symptoms such
as:
- muscle and joint pain,
- fever and
- general discomfort.
Serious kidney or nervous system problems are rare.
These are just a few examples of what cutaneous lupus
rashes may look like. Because the appearance of skin
rashes in lupus can be quite variable, it can be difficult
to diagnose just by looking at the lesion, and therefore
other tests may be necessary.
Reference: "The Skin In Lupus," by Richard D. Sontheimer,
M.D. & Thomas T. Provost, M.D. Lupus News, Volume 18,
Number 2, Spring 1998.
How is cutaneous lupus diagnosed?
Cutaneous lupus, because of the great deal of variability
in the way that the skin rashes may appear, can be quite
difficult to diagnose. However, a skin biopsy may be
performed and this may be diagnostic.
What kind of Doctor specializes in cutaneous lupus?
A dermatologist specializes in diseases of the skin,
hair and nails. Cutaneous lupus is one of hundreds of
diseases that involve these areas.
How is cutaneous lupus treated?
Treatment of cutaneous lupus may include corticosteroid
creams or ointments applied to the rash or lesions.
If the lesion does not respond to cream or ointment,
the doctor may prescribe injections of corticosteroids
directly into the lesion. If a person has particularly
widespread lesions, oral corticosteroid medications
may be prescribed or the doctor may prescribe anti-malarial
medications such as Plaquenil (hydroxychloroquine).
In addition to these medications, sunscreens are an
important part of the prevention of photosensitivity
(where skin exposed to ultra-violet light reacts by
developing a rash) reactions that may occur with cutaneous
lupus lesions.
Reference: see brochure:
Skin
Disease in Lupus.
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11. How is cutaneous lupus different
from systemic lupus?
Cutaneous lupus is confined to the skin, whereas systemic
lupus may involve not only the skin but any of the other
organ systems in the body.
Can cutaneous lupus turn into systemic lupus?
In approximately 10% of the cases of cutaneous lupus,
it evolves and develops into systemic lupus. However,
this can't be predicted or prevented from happening.
References: see brochures,
Skin
Disease in Lupus, and
What
is Lupus?
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12. I have hair loss due to several
scars on my scalp. All are about the size of silver
dollars. Is there anything to help this kind of hair
loss?
If biopsy results indicate advanced scarring on the
scalp, then there is little chance of bringing back
significant amounts of hair. If, on the other hand,
scarring is not prevalent, then treatment with corticosteroid
and/or antimalarial drugs may be successful in getting
the hair to return. When the disease is inactive, and
scarring is not present hair usually grows back.
Reference: see brochure:
Skin
Disease in Lupus
Will the drugs used to treat baldness help the hair
loss due to lupus?
Suppressing the disease with medication helps hair to
re-grow.
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13. Is there anything that can
be done to cover the lesions (sores) that show-up on
my face?
Yes. There are make-up products available commercially
which may be helpful in this situation. Fallene's Total
BlockŪ SPF 60 Foundation can be used as a make-up as
well as a sun block.
References:
Covermark Cosmetics
157 Veterans Drive, Suite D
Northvale, NJ 07647
1-800-524-1120
www.covermarkusa.com/
Total Block
Fallene, Ltd.
677 West De Kalb Pike
King of Prussia, PA 19406
1-800-332-5536
http://www.totalblock.com/
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14. Can lupus cause either hives
or a sensation of burning in the skin?
Lupus may cause hives. Itching can also occur but this
is not a common finding. The sensation of itching is
due to irritation of nerve fibers in the skin. If the
irritation is more intense, it may cause a burning sensation.
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15. What is photosensitivity and
what are photosensitivity reactions?
Photosensitivity is sensitivity to the UV (ultra-violet)
rays from the sunlight and other UV light sources. Photosensitivity
reactions typically include a rash, but may also trigger
fever, fatigue, joint pain and other symptoms of SLE.
In some cases, sun exposure has resulted in the onset
of kidney disease. Reference: see brochure:
Skin
Disease in Lupus
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DRUG-INDUCED LUPUS
16. What is the difference between
drug-induced lupus (DIL) and systemic lupus?
Systemic lupus is irreversible, whereas drug-induced
lupus generally is reversible when the drug is discontinued.
The symptoms of drug-induced lupus generally DO NOT
include kidney involvement or central nervous system
involvement
What drugs are most commonly associated with DIL?
There is just a short list of medications for which
there is DEFINITE PROOF of an association with drug-induced
lupus. The list includes 5 medications.
Procainamide (pro-can-a-mide) brand names Procan
or Pronestyl used for heart rhythm abnormalities
Hydralazine (hi-dral-a-zine) brand name Apresoline
or Apresazide used for high blood pressure
Isoniazid (i-so-nye-a-zid) brand name INH used
for tuberculosis
Quinidine (quin-i-dean) used for heart rhythm
abnormalities
Phenytoin, brand name Dilantin used for convulsive
disorders (seizures).
Are there other drugs that might cause DIL?
The overwhelming majority of cases of DIL are due to
one of the 5 drugs mentioned earlier. There are other
drugs, which might POSSIBLY be associated, but there
is not yet definite proof of an association between
them and drug-induced lupus. Check with your doctor
to see if you are on any medication that might possibly
explain your symptoms.
Should people diagnosed with SLE or Cutaneous lupus
avoid taking the drugs associated with drug-induced
Lupus?
Most of the drugs associated with DIL can be safely
used in people with SLE or cutaneous lupus if there
are no suitable alternatives.
How soon after taking the drug do the symptoms appear?
Drug-induced lupus requires months to years of frequent
exposure to a drug before symptoms appear.
How soon after discontinuing the drug will the symptoms
go away?
It varies from days, to weeks, to months. Usually symptoms
fade after six months. The ANA may remain positive for
years.
Reference: see brochure:
Drug-Induced
Lupus Erythematosus
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CAUSE
17. What causes lupus?
The exact cause of lupus is unknown. It is likely to
be due to a combination of factors. For example, a person's
genetic make-up and exposure to certain unknown trigger
factors may provide the right environment in which lupus
can develop.
Reference: see Facts & Overview,
What
is Lupus?
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18. Is it hereditary?
We suspect (but do not have scientific proof) that people
inherit something from their parents that predisposes
them to develop lupus. They are not necessarily pre-destined
to develop lupus, but they may be more susceptible.
At the present time, there are no genetic tests to determine
who is susceptible and who is not.
Reference: see Facts & Overview,
What
is Lupus?
Where is genetic research being done?
Several researchers are doing Linkage Studies to evaluate
families in which more than one member has lupus. They
hope to be able to identify a gene or genes that are
responsible for lupus. Undoubtedly the resources of
all of these groups will eventually be pooled, but there
is much to be gained from the current phase of multiple
independent efforts. Participation in multiple studies
is encouraged. More are listed in the Clinical Trials
section. If you are interested in participating or would
like information, visit the
LFA
Research Programs page and click on "Clinical
Trials," and/or contact any of the following:
Oklahoma Medical Research Foundation
Lupus Multiplex Registry & Repository
825 NE 13th Street, MS #5
Oklahoma City, OK 73104
Call Carisa Cooney, Kurt Downing, Jessica Lombard, or
another Recruiter at 1-888-655-8787 (1-888-OK-LUPUS)
or (405) 271-7479
http://cpu1.omrf.ouhsc.edu/lupus/
National Native American Lupus Project
This project seeks to find members of Tribal Communities
willing to participate in the search for the genetic
causes of systemic lupus. Researchers are speaking
with leaders and members of different tribal groups
to exchange information and ideas about the Project,
determine how best to conduct the research with specific
groups, and establish complementary goals.
If you are Native American and have family members
who may have lupus, or know of a Native American family
with lupus, please call the NNALP at the Oklahoma
Medical Research Foundation toll free at 1-888-655-8787.
African-American Families with Lupus:
Scientists at the Oklahoma Medical Research Foundation
are seeking African-American families to participate
in studies of systemic lupus erythematosus call the
Recruiter at Oklahoma Medical Research Foundation
1-888-65 LUPUS (1-888-655-8787)
Seeking Lupus Families
Families with at least two members who are related
by blood and have been diagnosed with lupus should
call the Recruiter at the Oklahoma Medical Research
Foundation at: 1-888-65 LUPUS (1-888-655-8787)
Families with three or more affected members (siblings,
cousins, aunts, uncles, grandparents, etc.) would
be exceptionally helpful.
Genetics of SLE - Family Study
Division of Rheumatology
University of Minnesota
14-154 Moos Tower
515 E. Delaware St.
Minneapolis, MN 55455
Tel: 1-800-51-LUPUS (1-800-515-8787)
Dr. Jane E. Salmon
Hospital for Special Surgery
Weill Medical College of Cornell University
New York, NY
Tel: (212) 606-1171
Betty P. Tsao, Ph.D.
Division of Rheumatology
Rehabilitation Center 32-59
1000 Veteran Avenue
UCLA School of Medicine
Los Angeles, CA 90095-1670
Tel:1-800-273-0730
The following investigators are participating in the
multi-center Genetics PROFILE study and are interested
in people with lupus and their biological parents who
live in the geographic areas of Birmingham, Alabama;
Baltimore, Maryland; Chicago, Illinois and Houston,
Texas.
Dr. Graciela Alarcon
University of Alabama at Birmingham
Birmingham, AL
(205) 934-2799
Dr. Robert Kimberly
University of Alabama at Birmingham
Birmingham, AL
(205) 934-5306
Dr. Michelle Petri
Johns Hopkins University Hospital
Baltimore, MD
(410) 614-1839
Dr. Rosalind Ramsey-Goldman
Northwestern University
Chicago, IL
(312) 503-8197
Dr. John Reveille
University of Texas-Houston
Houston, TX
(713) 500-6900
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19. Can I have my children tested?
Testing isn't advisable in individuals who do not have
symptoms.
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20. What can trigger lupus?
It is believed that certain things may trigger the onset
of lupus or cause lupus to flare. Trigger factors include:
- Ultra-violet (UV) light
- Certain prescription drugs
- Infection
- Certain antibiotics
- Hormones
Although there is no scientific evidence, it is possible
that extreme stress may play a role in triggering lupus.
Reference: see Facts & Overview,
What
is Lupus?
Is lupus stress related?
We do not know for certain. There are many anecdotal
reports (personal accounts) of lupus flaring during
or after a stressful time, but this question requires
further scientific study.
Are flares related to hormones?
We do not know for sure. There are many anecdotal reports
(personal accounts) of lupus flaring with pregnancy,
the menstrual cycle, birth control pills, and hormone
replacement therapy. We suspect that hormones play a
role, but we don't know precisely what the role is.
Lupus has a 9:1 female to male ratio so it is likely
that hormones play a role, perhaps by influencing the
immune system. Also, we know that female hormones have
a definite effect on lupus mice used in research.
Are there any medications people with lupus should
avoid?
There are no absolute contraindications to needed and
appropriate medications for a person with systemic lupus.
Your doctor should watch for allergic reactions to medications,
and watch for any connection between flares and estrogen
or oral contraceptives.
People with lupus s |
