The Official Patient's Sourcebook on Lupus (4 page)

research centers and the federal focal point for medical research in the

United States. At any given time, the NIH supports some 35,000 research

grants at universities, medical schools, and other research and training

institutions, both nationally and internationally. The rosters of those who

have conducted research or who have received NIH support over the years

include the world’s most illustrious scientists and physicians. Among them

are 97 scientists who have won the Nobel Prize for achievement in medicine.

6 Adapted from the NIH:
http://www.nih.gov/about/NIHoverview.html
.

10 Lupus Nephritis

There is no guarantee that any one Institute will have a guideline on a

specific disease, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare diseases. The best way to

access NIH guidelines is via the Internet. Although the NIH is organized into

many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications

dealing with lupus nephritis and associated conditions:

· Office of the Director (OD); guidelines consolidated across agencies

available at
http://www.nih.gov/health/consumer/conkey.htm

· National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M.,

Inc.) with guidelines available at

http://www.nlm.nih.gov/medlineplus/healthtopics.html

· National Institute of Diabetes and Digestive and Kidney Diseases

(NIDDK); guidelines available at

http://www.niddk.nih.gov/health/health.htm

Among these, the National Institute of Diabetes and Digestive and Kidney

Diseases (NIDDK) is particularly noteworthy. The NIDDK’s mission is to

conduct and support research on many of the most serious diseases affecting

public health.
7 The I
nstitute supports much of the clinical research on the diseases of internal medicine and related subspecialty fields as well as many

basic science disciplines. The NIDDK’s Division of Intramural Research

encompasses the broad spectrum of metabolic diseases such as diabetes,

inborn errors of metabolism, endocrine disorders, mineral metabolism,

digestive diseases, nutrition, urology and renal disease, and hematology.

Basic research studies include biochemistry, nutrition, pathology,

histochemistry, chemistry, physical, chemical, and molecular biology,

pharmacology, and toxicology. NIDDK extramural research is organized

into divisions of program areas:

· Division of Diabetes, Endocrinology, and Metabolic Diseases

· Division of Digestive Diseases and Nutrition

· Division of Kidney, Urologic, and Hematologic Diseases

The Division of Extramural Activities provides administrative support and

overall coordination. A fifth division, the Division of Nutrition Research

Coordination, coordinates government nutrition research efforts. The

Institute supports basic and clinical research through investigator-initiated

7 This paragraph has been adapted from the NIDDK:

http://www.niddk.nih.gov/welcome/mission.htm
. “Adapted” signifies that a passage is reproduced exactly or slightly edited for this book.

Guidelines 11

grants, program project and center grants, and career development and

training awards. The Institute also supports research and development

projects and large-scale clinical trials through contracts. The following

patient guideline was recently published by the NIDDK on lupus nephritis.

What Is Lupus Nephritis?
8

Lupus nephritis is an inflammation of the kidney caused by systemic lupus

erythematosus (SLE), a disease of the immune system. SLE causes harm to

the skin, joints, kidneys, and brain.

What causes SLE is unknown. Many factors may play a role, including:

· Heredity (a gene passed down by a parent)

· Infections

· Viruses

· Air pollution

Some people with SLE may have no symptoms of kidney disease. However,

lupus nephritis may cause weight gain, high blood pressure, dark urine, or

swelling around the eyes, legs, ankles, or fingers.

Diagnosis may require urine and blood tests and x-rays of the kidneys.

Treatment depends on the symptoms. Medicines can decrease swelling,

lower blood pressure, and decrease inflammation by suppressing the

immune system. The patient may need to limit protein, sodium, and

potassium intake.

For More Information

More information is available from:

American Lupus Society

260 Maple Court, Suite 123

Ventura, CA 93003

(805) 339–0443

(800) 331–1802

8 Adapted from The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK):
http://www.niddk.nih.gov/health/kidney/summary/lupuneph/lupuneph.htm
.

12 Lupus Nephritis

Lupus Foundation of America, Inc.

1300 Piccard Drive, Suite 200

Rockville, MD 20850–4303

(301) 670–9292

(800) 558–0121

E-mail: [email protected]

Home page:
www.lupus.org/

National Arthritis and Musculoskeletal and Skin Diseases Information

Clearinghouse
(NAMSIC)

National Institutes of Health

1 AMS Circle

Bethesda, Maryland 20892–3675

NAMSIC has an online publication on Systemic Lupus Erythematosus

Additional Information on Lupus Nephritis

The National Kidney and Urologic Diseases Information Clearinghouse

collects resource information on kidney and urologic diseases for the

Combined Health Information Database (CHID). CHID is a database

produced by health-related agencies of the Federal Government. This

database provides titles, abstracts, and availability information for health

information and health education resources.

To provide you with the most up-to-date resources, information specialists

at the clearinghouse created an automatic search of CHID. To obtain this

information you may view the results of the automatic search on Lupus

Nephritis.

Or, if you wish to perform your own search of the database, you may access

the CHID Online web site and search CHID yourself.

National Kidney and Urologic Diseases Information Clearinghouse

3 Information Way

Bethesda, MD 20892-3580

E-mail: National Kidney and Urologic Diseases Information

Clearinghouse

The National Kidney and Urologic Diseases Information Clearinghouse

(NKUDIC) is a service of the National Institute of Diabetes and Digestive

and Kidney Diseases (NIDDK). The NIDDK is part of the National

Institutes of Health under the U.S. Department of Health and Human

Services. Established in 1987, the clearinghouse provides information

Guidelines 13

about diseases of the kidneys and urologic system to people with kidney

and urologic disorders and to their families, health care professionals,

and the public. NKUDIC answers inquiries; develops, reviews, and

distributes publications; and works closely with professional and patient

organizations and Government agencies to coordinate resources about

kidney and urologic diseases. Publications produced by the

clearinghouse are carefully reviewed for scientific accuracy, content, and

readability.

More Guideline Sources

The guideline above on lupus nephritis is only one example of the kind of

material that you can find online and free of charge. The remainder of this

chapter will direct you to other sources which either publish or can help you

find additional guidelines on topics related to lupus nephritis. Many of the

guidelines listed below address topics that may be of particular relevance to

your specific situation or of special interest to only some patients with lupus nephritis. Due to space limitations these sources are listed in a concise

manner. Do not hesitate to consult the following sources by either using the

Internet hyperlink provided, or, in cases where the contact information is

provided, contacting the publisher or author directly.

Topic Pages: MEDLINEplus

For patients wishing to go beyond guidelines published by specific Institutes

of the NIH, the National Library of Medicine has created a vast and patient-

oriented healthcare information portal called MEDLINEplus. Within this

Internet-based system are “health topic pages.” You can think of a health

topic page as a guide to patient guides. To access this system, log on to

http://www.nlm.nih.gov/medlineplus/healthtopics.html
. From there you

can either search using the alphabetical index or browse by broad topic

areas.

If you do not find topics of interest when browsing health topic pages, then

you can choose to use the advanced search utility of MEDLINEplus at

http://www.nlm.nih.gov/medlineplus/advancedsearch.html
. This utility is similar to the NIH Search Utility, with the exception that it only includes

material linked within the MEDLINEplus system (mostly patient-oriented

information). It also has the disadvantage of generating unstructured results.

We recommend, therefore, that you use this method only if you have a very

targeted search.

14 Lupus Nephritis

The Combined Health Information Database (CHID)

CHID Online is a reference tool that maintains a database directory of

thousands of journal articles and patient education guidelines on lupus

nephritis and related conditions. One of the advantages of CHID over other

sources is that it offers summaries that describe the guidelines available,

including contact information and pricing. CHID’s general Web site is

http://chid.nih.gov/
.

To search this database, go to

http://chid.nih.gov/detail/detail.html
. In particular, you can use the

advanced search options to look up pamphlets, reports, brochures, and

information kits. The following was recently posted in this archive:

·
Questions and Answers About Autoimmunity

Source: Bethesda, MD: National Institute of Arthritis and Musculoskeletal

and Skin Diseases (NIAMS) Information Clearinghouse. 2002. 32 p.

Contact: Available from National Institute of Arthritis and

Musculoskeletal and Skin Diseases (NIAMS) Information Clearinghouse.

1 AMS Circle, Bethesda, MD 20892-3675. (877) 226-4267 toll-free or (301)

495-4484. Fax (301) 718-6366. TTY (301) 565-2966. E-mail:

[email protected]. Website: www.niams.nih.gov. Price: 1 to 25

copies free. Order Number: AR-242 QA (booklet), or AR-242L QA (large

print fact sheet).

Summary: This booklet provides people who have an autoimmune

disease with information on the causes, diagnosis, and treatment of such

diseases. Autoimmune diseases occur when the body attacks its own cells

as invaders. Although the cause of autoimmunity is unknown, most

scientists believe that genetic and environmental factors are involved.

Autoimmunity can affect almost any part of the body, and the problems

caused by autoimmunity depend on the tissues targeted. Diagnosis is

based on the medical history, a physical examination, and medical tests.

Treatment depends on the type of disease and its symptoms and severity.

The goals of treatment are to relieve symptoms, preserve organ function,

and target disease mechanisms. The types of doctors who provide

treatment for autoimmune diseases vary, and they include

rheumatologists, endocrinologists, neurologists, hematologists,

gastroenterologists, dermatologists, and nephrologists. Problems that

people experience with an autoimmune disease also vary and may be

related to self esteem, self care, family relationships, sexual relations, and pregnancy. Research is being conducted to help people with autoimmune

diseases such as rheumatoid arthritis, systemic lupus erythematosus,

lupus nephritis, vitiligo, type 1 diabetes, multiple sclerosis, and multiple

autoimmune diseases. The booklet includes a list of government and

Guidelines 15

other organizations that can provide information about autoimmunity.

Appendices provide glossaries of terms and diseases.

·
Kidney Disease and Lupus

Source: Rockville, MD: Lupus Foundation of America. 1999. 6 p.

Contact: Available from Lupus Foundation of America. 1300 Piccard

Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 670-

9292. Fax (301) 670-9486. Website: www.lupus.org/lupus. Price:

Available as part of a package of 21 different lupus related brochures for

$3.95 plus shipping and handling.

Summary: This pamphlet provides people who have systemic lupus

erythematosus (SLE) with information on the kidney disease that

accompanies it. This type of kidney disease, which is known as lupus

nephritis or lupus glomerulonephritis, may affect about one third of

those who have SLE. Symptoms that indicate the possibility of lupus

nephritis include foamy, frothy urine; nocturnal urination; and fluid

retention with weight gain and swelling. The clinical path of lupus

nephritis is highly variable, with some people experiencing mild

abnormalities and others experiencing more persistent, severe ones.

Studies that can be performed to test for lupus nephritis are urinalysis,