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about Lupus

Lupus is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, and kidneys.

Causes of Lupus

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.

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.

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:

Lupus Multiplex Registry & Repository
Oklahoma Medical Research Foundation
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)

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

19. Can I have my children tested?

Testing isn't advisable in individuals who do not have symptoms.

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.

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 should be especially careful if they are prescribed sulfa antibiotics. These medications (Bactrim, Gantrisin, Septra) are often prescribed for urinary tract infections and may cause an increase in sun sensitivity and occasionally lower blood counts resulting in disease flares. There are also sulfa diuretics (water pills) such as Dyazide and diabetic drugs containing sulfa such as Aldactone.

Does lupus occur more often in certain geographical areas?

No. There are on-going studies of several suspected "clusters" of lupus case but no evidence has emerged that suggests lupus is more prevalent in specific areas.

Is lupus related to pollution or toxic chemicals?

We do not know. The cause of lupus, and many other autoimmune diseases, remains unknown. The respective roles of genetic and environmental factors in triggering lupus remain to be determined. The National Institutes of Health (NIH), the principal biomedical research agency of the United States Government established the National Institute of Environmental Health Sciences (NIEHS) to study issues related to environmental health. A meeting in September of 1998 at Research Triangle Institute (RTI) in Durham, NC organized by NIEHS, looked at autoimmunity and the environment and specifically lupus. A review of the discussion was published in the medical journal, Arthritis and Rheumatism (1998 Oct; 41(10): 1714-24) in an article titled: "Hormonal, Environmental, and Infectious Risk Factors for Developing Systemic Lupus Erythematosus" by Cooper GS, Dooley MA, Treadwell EL, St Clair EW, Parks CG, Gilkeson GS.
The National Institute of Environmental Health Sciences (NIEHS) website:
http://www.niehs.nih.gov/

Can something in your diet cause lupus?

We do not believe so.

21. Silicone breast implants

I have silicone breast implants and am being tested for lupus. Is there any connection between silicone implants and lupus?

There has been a great deal of interest in this issue and to date there have been numerous well controlled research studies since 1992 that have looked at this question. However, none has shown a clear association between silicone breast implants and the development of lupus disease.

In March 1998, the National Institutes of Health requested that the Institute of Medicine (IOM) of the National Academy of Sciences (NAS) provide an independent, unbiased review of past and ongoing research on the health effects of silicone breast implants. To respond to this request, the IOM established a committee of 12 experts in relevant scientific and clinical areas to assess the scientific information on silicone breast implants and the relationship, if any, to various health conditions.

A one-day scientific workshop was convened on July 22, 1998 in Washington, DC-testimony included epidemiology and observational studies, immunology reports, company data from Mentor Corp. and Dow Corning Corp., and surgery, pathology, and radiology information. A public hearing followed on July 24, to gather information and views from a wide range of lay, advocacy, industry, and public policy groups.

The following year, in June of 1999, the Institute of Medicine's final report concurred with the scientific evidence that had accumulated over the previous 7 years which does not support the notion that silicone breast implants cause lupus. At the present time, as far as we know, there is no scientific evidence to indicate a cause-effect relationship between silicone breast implants and lupus.

If I have my implants removed, will my lupus symptoms improve, will the lupus go away?

We don't know. There have been reports of women who had silicone breast implants removed and their symptoms improved. On the other hand, there have been cases where symptoms have not improved after removal. To receive the most recent information on breast implants contact the
Food and Drug Administration (FDA)
Breast Implant Information Line
1-800-532-4440 or visit their web site at:
http://www.fda.gov/cdrh/breastimplants/

The final report made by the Institute of Medicine is available online at:
http://www.nap.edu/books/0309065321/html/

22. Is there any truth to the claims being circulated on the Internet that lupus is caused by the artificial sweetener, aspartame?

We are aware there is an email message circulating on the Internet warning individuals with lupus about dangers associated with using the artificial sweetener aspartame. The Lupus Foundation of America consulted with the chair of the LFA Medical Council, Evelyn Hess, MD, MACP, MACR. Dr. Hess is one of the nation's leading researchers in the field of lupus specializing in environmental influences. According to Dr. Hess, there is, as of now, no specific proof of an association with aspartame as a cause or worsening of SLE.

People with lupus should always consult with their physician before making any changes in their medical treatment, diet, exercise or other routine based on information received via the Internet or other sources lacking known credentials.


 

 

 

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