The Official Patient's Sourcebook on Lupus (5 page)

blood studies, 24 hour urine collection, imaging, and kidney biopsy.

Corticosteroids and cytotoxic or immunosuppressive drugs are the major

forms of drug therapy used to treat lupus nephritis. Despite treatment,

some people may experience progressive loss of kidney function. These

people will need hemodialysis or peritoneal dialysis and eventually

kidney transplantation. The pamphlet also provides information on the

Lupus Foundation of America. 1 table.

The National Guideline Clearinghouse™

The National Guideline Clearinghouse™ offers hundreds of evidence-based

clinical practice guidelines published in the United States and other

countries. You can search their site located at
http://www.guideline.gov
by using the keyword “lupus nephritis” or synonyms. The following was

recently posted:

·
Intravenous immunoglobulin preparations.

Source: University HealthSystem Consortium.; 1999 March; 216 pages

http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00

1202&sSearch_string=lupus+nephritis

16 Lupus Nephritis

Healthfinder™

Healthfinder™
is an additional source sponsored by the U.S. Department of Health and Human Services which offers links to hundreds of other sites that

contain healthcare information. This Web site is located at

http://www.healthfinder.gov
. Again, keyword searches can be used to find guidelines. The following was recently found in this database:

·
Lupus Nephritis

Summary: Brief overview of the symptoms, diagnosis, and treatment of

lupus nephritis.

Source: National Institute of Diabetes and Digestive and Kidney Diseases,

National Institutes of Health

http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R

ecordID=6519

The NIH Search Utility

After browsing the references listed at the beginning of this chapter, you

may want to explore the NIH Search Utility. This allows you to search for

documents on over 100 selected Web sites that comprise the NIH-WEB-

SPACE. Each of these servers is “crawled” and indexed on an ongoing basis.

Your search will produce a list of various documents, all of which will relate in some way to lupus nephritis. The drawbacks of this approach are that the

information is not organized by theme and that the references are often a

mix of information for professionals and patients. Nevertheless, a large

number of the listed Web sites provide useful background information. We

can only recommend this route, therefore, for relatively rare or specific

disorders, or when using highly targeted searches. To use the NIH search

utility, visit the following Web page:
http://search.nih.gov/index.html
.

Guidelines 17

Additional Web Sources

A number of Web sites that often link to government sites are available to

the public. These can also point you in the direction of essential information.

The following is a representative sample:

· AOL:
http://search.aol.com/cat.adp?id=168&layer=&from=subcats

· drkoop.comÒ:
http://www.drkoop.com/conditions/ency/index.html

· Family Village:
http://www.familyvillage.wisc.edu/specific.htm

· Google:

http://directory.google.com/Top/Health/Conditions_and_Diseases/

· Med Help International:
http://www.medhelp.org/HealthTopics/A.html

· Open Directory Project:

http://dmoz.org/Health/Conditions_and_Diseases/

· Yahoo.com:
http://dir.yahoo.com/Health/Diseases_and_Conditions/

· WebMDÒHealth:
http://my.webmd.com/health_topics

Vocabulary Builder

The material in this chapter may have contained a number of unfamiliar

words. The following Vocabulary Builder introduces you to terms used in

this chapter that have not been covered in the previous chapter:

Ankle:
That part of the lower limb directly above the foot. [NIH]

Autoimmunity:
Process whereby the immune system reacts against the

body's own tissues. Autoimmunity may produce or be caused by

autoimmune diseases. [NIH]

Biopsy:
The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU]

Cytotoxic:
Pertaining to or exhibiting cytotoxicity. [EU]

Endocrinology:
A subspecialty of internal medicine concerned with the

metabolism, physiology, and disorders of the endocrine system. [NIH]

Glomerulonephritis:
A variety of nephritis characterized by inflammation of the capillary loops in the glomeruli of the kidney. It occurs in acute,

subacute, and chronic forms and may be secondary to haemolytic

streptococcal infection. Evidence also supports possible immune or

autoimmune mechanisms. [EU]

Hematology:
A subspecialty of internal medicine concerned with

18 Lupus Nephritis

morphology, physiology, and pathology of the blood and blood-forming

tissues. [NIH]

Heredity:
1. the genetic transmission of a particular quality or trait from parent to offspring. 2. the genetic constitution of an individual. [EU]

Inflammation:
A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is

usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH]

Lupus:
A form of cutaneous tuberculosis. It is seen predominantly in

women and typically involves the nasal, buccal, and conjunctival mucosa.

[NIH]

Molecular:
Of, pertaining to, or composed of molecules : a very small mass of matter. [EU]

Nephritis:
Inflammation of the kidney; a focal or diffuse proliferative or destructive process which may involve the glomerulus, tubule, or interstitial

renal tissue. [EU]

Potassium:
An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation

in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume

and maintenance of the water-electrolyte balance. [NIH]

Progressive:
Advancing; going forward; going from bad to worse;

increasing in scope or severity. [EU]

Rheumatoid:
Resembling rheumatism. [EU]

Sclerosis:
A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used

chiefly for such a hardening of the nervous system due to hyperplasia of the

connective tissue or to designate hardening of the blood vessels. [EU]

Spectrum:
A charted band of wavelengths of electromagnetic vibrations

obtained by refraction and diffraction. By extension, a measurable range of

activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU]

Systemic:
Pertaining to or affecting the body as a whole. [EU]

Toxicology:
The science concerned with the detection, chemical

composition, and pharmacologic action of toxic substances or poisons and

the treatment and prevention of toxic manifestations. [NIH]

Transplantation:
The grafting of tissues taken from the patient's own body or from another. [EU]

Urinalysis:
Examination of urine by chemical, physical, or microscopic means. Routine urinalysis usually includes performing chemical screening

Guidelines 19

tests, determining specific gravity, observing any unusual color or odor,

screening for bacteriuria, and examining the sediment microscopically. [NIH]

Urology:
A surgical specialty concerned with the study, diagnosis, and treatment of diseases of the urinary tract in both sexes and the genital tract in the male. It includes the specialty of andrology which addresses both male

genital diseases and male infertility. [NIH]

Viruses:
Minute infectious agents whose genomes are composed of DNA or RNA, but not both. They are characterized by a lack of independent

metabolism and the inability to replicate outside living host cells. [NIH]

Vitiligo:
A disorder consisting of areas of macular depigmentation,

commonly on extensor aspects of extremities, on the face or neck, and in skin

folds. Age of onset is often in young adulthood and the condition tends to

progress gradually with lesions enlarging and extending until a quiescent

state is reached. [NIH]

Seeking Guidance 21

CHAPTER 2. SEEKING GUIDANCE

Overview

Some patients are comforted by the knowledge that a number of

organizations dedicate their resources to helping people with lupus

nephritis. These associations can become invaluable sources of information

and advice. Many associations offer aftercare support, financial assistance,

and other important services. Furthermore, healthcare research has shown

that support groups often help people to better cope with their conditions.
9

In addition to support groups, your physician can be a valuable source of

guidance and support. Therefore, finding a physician that can work with

your unique situation is a very important aspect of your care.

In this chapter, we direct you to resources that can help you find patient

organizations and medical specialists. We begin by describing how to find

associations and peer groups that can help you better understand and cope

with lupus nephritis. The chapter ends with a discussion on how to find a

doctor that is right for you.

Associations and Lupus Nephritis

As mentioned by the Agency for Healthcare Research and Quality,

sometimes the emotional side of an illness can be as taxing as the physical

side.
10 Y
ou may have fears or feel overwhelmed by your situation. Everyone has different ways of dealing with disease or physical injury. Your attitude,

your expectations, and how well you cope with your condition can all

9 Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need.

10 This section has been adapted from
http://www.ahcpr.gov/consumer/diaginf5.htm
.

22 Lupus Nephritis

influence your well-being. This is true for both minor conditions and serious

illnesses. For example,
a study on female breast cancer survivors revealed that women who participated in support groups lived longer and

experienced better quality of life when compared with women who did not

participate. In the support group, women learned coping skills and had the

opportunity to share their feelings with other women in the same situation.

In addition to associations or groups that your doctor might recommend, we

suggest that you consider the following list (if there is a fee for an

association, you may want to check with your insurance provider to find out

if the cost will be covered):

·
American Autoimmune Related Diseases Association, Inc

Address: American Autoimmune Related Diseases Association, Inc.

Michigan National Bank Building, 15475 Gratiot Avenue, Detroit, MI

48205

Telephone: (313) 371-8600 Toll-free: (800) 598- 4668

Fax: (313) 371-6002

Email: [email protected]

Web Site: http://www.aarda.org

Background: The American Autoimmune Related Diseases Association,

Inc. (AARDA) is a national not-for-profit voluntary health agency

dedicated to bringing a national focus to autoimmunity, a major cause of

serious chronic diseases. The Association was founded for the purposes

of supporting research to find a cure for autoimmune diseases and

providing services to affected individuals. In addition, the Association's

goals include increasing the public's awareness that autoimmunity is the

cause of more than 80 serious chronic diseases; bringing national focus

and collaborative effort among state and national voluntary health

groups that represent autoimmune diseases; and serving as a national

advocate for individuals and families affected by the physical, emotional,

and financial effects of autoimmune disease. The American Autoimmune

Related Diseases Association produces educational and support materials

including fact sheets, brochures, pamphlets, and a newsletter entitled 'In

Focus.'.

Relevant area(s) of interest: Interstitial Cystitis

Finding More Associations

There are a number of directories that list additional medical associations

that you may find useful. While not all of these directories will provide

Seeking Guidance 23

different information than what is listed above, by consulting all of them,

you will have nearly exhausted all sources for patient associations.

The National Health Information Center (NHIC)

The National Health Information Center (NHIC) offers a free referral service

to help people find organizations that provide information about lupus

nephritis. For more information, see the NHIC’s Web site at

http://www.health.gov/NHIC/
or contact an information specialist by calling 1-800-336-4797.

DIRLINE

A comprehensive source of information on associations is the DIRLINE