The Lupus Study's FAQ's
(Frequently Asked Questions)

1) Why do you need blood from family members who do not have SLE?
2) Why does it take so long to diagnose SLE in some cases?

3) What else can I do to help find a cure?
4) What will be done with my blood?
5) Do breast implants cause lupus?
6) Does lupus skip generations?
7) What are the types of lupus?
8) Why do we use controls (unrelated participants who do not have SLE and do not have any relatives that have SLE)?
9) Is there one specific test for lupus?
10) What does a "false positive" result on a syphilis test mean?
11) Where in the World Wide Web can I find information on lupus?

1) Why do you need blood from family members who do not have SLE?

Because we are trying to determine the inheritance patterns of genes through generations in families, we need parents, grandparents, and some aunts, uncles, brothers, and sisters to participate. The specific family members that qualify for participation are determined by their blood relationship to the lupus patient(s).

2) Why does it take so long to diagnose SLE in some cases?

There are several possible reasons:

  • In many cases SLE develops over time. A person may have only one or two symptoms for several years. Gradually the illness will evolve until the patient has enough lupus-related problems that a diagnosis can be made.
  • SLE can begin with mild, somewhat vague symptoms that are also seen in other, more common illnesses. Examples of these are fatigue, fever and intermittent joint pain.
  • Sometimes the first symptoms a patient has are symptoms not frequently seen in lupus, like abdominal pain. In this situation, other illnesses that more commonly involve these symptoms would be evaluated before the possibility of lupus is considered.
  • Making the diagnosis is not as clear cut as it is in many other illnesses. Determining the correct diagnosis is the professional business of doctors. The diagnosis is based on the patient’s symptoms, history, physical exam, blood test results and, possibly, results of other tests like x-rays, CT scans, etc. The doctor has to consider each piece of information as it relates to the other information available about that patient’s condition and try to find a single explanation, the diagnosis. Of course, even the doctor may be more or less certain that a specific diagnosis is really correct and sometimes the diagnosis of lupus is not as certain as the doctor or patient would like.

3) What can I do to help find a cure?

Developing a cure for SLE is extremely difficult because we don't know what the cause is, and there are many aspects of the disease we don't understand very well. Therefore, research is extremely important. Your participation in studies such as ours is a great way to help. Some additional ideas for ways you can help are listed below:

  • You can help us find additional families by telling other people that we are looking for families that have at least two members diagnosed with SLE.
  • We have printable flyers available on this website that advertise our genetic linkage study of SLE that you can print and post in public places in your community.
  • Tell your physician about our study. He or she may have other patients who qualify. If you wish to make a monetary donation, you may do so via the OMRF website (donations may be specified for Lupus Studies) or we can send you a (click link to request by email). We couldn't do our jobs in the research lab without your help!

4) What will be done with my blood?

  • A group of tests that are important for diagnosing lupus will be performed. The results of these tests (serology) will be sent to you if you choose to receive them.
  • The DNA in your blood will be analyzed to determine which genes may be involved in lupus and to address other scientific questions about lupus as they arise.
  • A permanent cell line will be established and this cell line may be used for other approved lupus research at a later time.
  • Some of your blood cells will be stored for future lupus research.
  • The materials and information you provide will be used to help conquer lupus and to perform other important lupus related research.

5) Do breast implants cause lupus?

Simply, no. This rumor surfaced in 1992 when the Food and Drug Administration banned silicone breast implants due to a high occurrence of rupture as well as a reported increase in autoimmune diseases such as fibromyalgia, rheumatoid arthritis, and lupus. In 1994, The American College of Rheumatology conducted the most comprehensive studies to date and found no connection between silicone breast implants and lupus or any other connective tissue disease.

6) Does lupus skip generations?

The pattern of inheritance is highly unpredictable. Sometimes the genes will show up in every generation, sometimes the genes skip one or more generations. Researchers are working to determine why this occurs, but for now it remains a mystery.

7) What are the types of lupus?

There are four main types of lupus:

Systemic Lupus Erythematosus (SLE)
This is commonly referred to as lupus. Characterized by chronic pain and fatigue, the disease can and does attack many of the body's systems. Especially susceptible are the kidneys, blood, skin and joints.
Discoid Lupus
This type of lupus is often referred to as cutaneous or skin lupus. It is mainly concentrated at the skin, but can also attack hair follicles and mucus membranes. It will not affect internal organs.
Drug-Induced Lupus
This can be a side-effect of certain medications. Symptoms can mimic those of SLE, but characteristically resolve after suspending use of the medication.
Neonatal Lupus
A rare condition involving the passage of maternal antibodies that affect the skin, heart and blood of the fetus. Characterized by a rash that appears in the first few weeks after birth, it often disappears after about six months.

8) Why do we use controls (unrelated participants who do not have SLE and do not have any relatives that have SLE)?

Scientific research is done by making comparisons. What is the best kind of person to compare with the lupus patients? Those with the most genetic differences from lupus patients work the best. These comparison participants (referred to by scientists as “controls”) are unrelated people with no known lupus in their families. With them we have the best chance to make the best comparison. return to Healthy Individuals...

9) Is there one specific test for lupus?

No. There are several tests, commonly known as a lupus panel, that can indicate whether certain conditions are present in a patient. Tests can determine that the body is undergoing an autoimmune attack, but even the best test is only an indication and must be taken into consideration with other diagnostic methods.

10) What does a "false positive" result on a syphilis test mean?

The most commonly used syphilis tests screen for an antibody to the syphilis organism. Lupus patients sometimes have a very similar antibody. This similar antibody, the antiphospholipid antibody (aPL), can cause an incorrect positive result on a syphilis test. If the doctor suspects that the patient may not really have syphilis, he may choose to then run a different, more complicated and expensive test that checks specifically for the syphilis organism. If this test is negative, then the patient does not have syphilis and the result of the first test is considered to be a "false positive". A false-positive syphilis test in a person's medical history may be an indication of lupus.

11) Where in the World Wide Web can I find information on lupus?

Lupus Foundation of America (www.lupus.org) is a great site for general lupus information as well as finding lupus resources in your area.

National Institute for Arthritis and Musculoskeletal and Skin Diseases (NIAMS) (www.niams.nih.gov) contains general information about musculoskeletal diseases and is a good starting point for research. NIAMS is part of the National Institutes of Health (www.nih.gov).

Lupus Foundation of Northern California (www.saclupus.org) includes News and Education sections that make available some of the most detailed, thorough and up-to-date lupus information on the web.

SLE Foundation of New York (www.lupusny.org) is great for general information and provides information about the latest research developments.

American College of Rheumatology (ACR) (www.rheumatology.org) can be used to locate an ACR-accredited rheumatologist in your area.

Arthritis Foundation of America (www.arthritis.org) offers event news, nutrition tips and relationship advice for those dealing with chronic pain and any type of arthritis.

WebMD (www.webmd.com) is great for general medical information. It contains a wealth of knowledge on any number of medical topics.

National Institute of Diabetes and Digestive and Kidney Disease (NIDDK) (www.niddk.nih.gov) provides patient information on kidney diseases and treatments.

 

 

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LUPUS GENETIC STUDIES • OKLAHOMA MEDICAL RESEARCH FOUNDATION • 825 NE 13TH STREET MAILSTOP #5, OKLAHOMA CITY, OK 73104