Positive Options for Living with Lupus (20 page)

total lymphoid irradiation (TLI):
irradiation of lymph nodes with aim of reducing abnormal lymphocytes that congregate there
vasculitis:
inflammation of blood vessels
vasoconstrictors:
drugs that cause blood vessels to constrict
vasospasm:
spasmodic contraction, closing down of small blood vessels
vesicles:
small bladder-like cavities

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Further Reading

Aladjem, Henrietta (founder of the Lupus Foundation of America).
The
Challenges of Lupus: Insights and Hope
. New York: Avery, 1998.

Blau, Sheldon Paul, and Dodi Schultz.
Living with Lupus: The Complete
Guide
, 2d rev. ed. Cambridge, MA: Da Capo Press, 2004.

Berne, Katrina.
Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible
Illnesses,
3d ed. Alameda, CA: Hunter House Publishers, 2002.

Holden, Triona.
Positive Options for Living with Antiphospholipid Syndrome
(APS).
Alameda, CA: Hunter House Publishers, 2003.

Holden, Triona, and Graham Hughes.
Talking about Lupus: What to Do
and How to Cope
. London: Piatkus Books, 2004.

Hughes, Graham.
Lupus: The Facts
. Oxford, U.K.: Oxford University Press, 2000.

Lahita, Robert G., and Robert H. Phillips.
Lupus Q&A: Everything You
Need to Know,
rev. ed. New York: Avery, 2004.

Phillips, Robert H.
Coping with Lupus,
3d ed. New York: Avery, 2001.

Pratt, Maureen, David Hallegua, and Daniel J. Wallace.
Taking Charge of
Lupus: How to Manage the Disease and Make the Most of Your Life
. New York: New American Library, 2002.

Wallace, Daniel J.
The Lupus Book: A Guide for Patients and Their Families
, 3rd ed. Oxford, U.K.: Oxford University Press, 2005.

◗ ◗ ◗

The following publications are available from Lupus U.K. (www.lupusuk

.com; see Resources):

Butterfly Traveller,
ELEF and Novartis Pharma Verlag, 2000. A medical phrasebook for the lupus patient and other travelers, in twelve different languages.

Lupus: A GP Guide to Diagnosis
, Lupus U.K., 2000.

Living with Lupus
(video), Lupus U.K. A guide for patients.

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Resources

Lupus Research and Support Organizations

Patient-support organizations for lupus exist all over the world. National associations will usually put you in touch with local groups, or, if you search the Internet, you may be able to locate them directly. In addition to patient support, some organizations focus on research. Their scope may be broader than lupus and embrace other forms of inflammatory arthritis, connective tissue diseases, or autoimmune diseases. Here are two of the most prominent lupus-related organizations in the United States:

Arthritis Foundation

P.O. Box 7669

Atlanta GA 30357-0669

(800) 568-4045

(404) 872-7100

Website: www.arthritis.org

Their website, which covers all forms of arthritis, provides information, news stories, the latest research, patient histories, and details of local offices all over the country.

Lupus Foundation of America

2000 L Street NW, Suite 710

Washington DC 20036

(202) 349-1156

Website: www.lupus.org

An organization with many offerings: patient support and chat rooms, news, information, advice and patient contact networks, clinical trials recruiting, a reading list. The scope is seemingly endless.

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Po s i t i v e O pt i o n s fo r L i v i n g w i t h L u p u s
Lupus Organizations in Other Countries

Australia

Lupus Australia Foundation

Level 2, 247–251 Flinders Ln.

Melbourne VIC 3000, Australia

Phone: +61-3-9650-5348

Website: www.lupusvic.org.au

A number of linked Australian state lupus-support organizations are at this Melbourne address.

Canada

Lupus Canada

590 Alden Rd., Suite 211

Markham ON L3R 8N2, Canada

(800) 661-1468 (in Canada)

(905) 313-0004

E-mail: [email protected]

Website: www.lupuscanada.org

A number of Canadian provinces’ lupus organizations are listed on the website. The Lupus Society of Alberta website (www.lupus.ab.ca) features a wonderful animated cartoon that explains lupus antibody behavior and makes you laugh!

Europe

The Arthritis Research Campaign (ARC)

Copeman House

St. Mary’s Ct. ,St. Mary’s Gate

Chesterfield Derbyshire S41 7TD, England

Phone: +44-870-850-5000

Website: www.arc.org.uk

ARC’s website provides details of research centers and scientific information about all forms of arthritis. ARC also publishes leaflets and a magazine called
Arthritis Today.

Hughes’ Syndrome Foundation

The Rayne Institute, Louise Coote Lupus Unit

Gassiot House

St. Thomas’ Hospital

London SE1 7EH, England

Phone: +44-20-7188-8217

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R e s o u r c e s

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+44-20-7188-7188, ext. 83570

Website: www.hughes-syndrome.org

The Louise Coote Lupus Centre is based at The Rayne Institute at St.

Thomas’ Hospital. The Institute (one of several) was established by the charitable Rayne Foundation with a mission to facilitate the flow of ideas between medical research and practicing doctors.

LUPUS UK

St James House

Eastern Rd.

Romford Essex RM1 3NH, England

Phone: +44-1708-731251

Website: www.lupusuk.com

A comprehensive site with news, information, advice, support contacts, and details of research in progress.

European Lupus Erythematosus Federation (ELEF)

St. James House

Eastern Rd.

Romford Essex RM1 3NH, England

Phone: +44-1708-731251

Website: www.elef.rheumanet.org

Other Helpful Organizations and Websites

A large number of associations and organizations in the United States present themselves instantly with an Internet search. I’ve listed below some of those I found most helpful (and entertaining): Organizations

The American Autoimmune Related Diseases Association www.aarda.org

National Institute of Arthritis, Musculoskeletal, and Skin Diseases www.niams.nih.gov

Websites

Alexandra Y. Zhang, M.D., and Craig E. Elmets, M.D. “Drug-Induced Photosensitivity.” www.emedicine.com/derm/topic108.htm (advice on things that increase photosensitivity).

Kevin J. McElwee. “Immunology”

www.keratin.com/am/amindex.shtml (a history of the immune system).

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Po s i t i v e O pt i o n s fo r L i v i n g w i t h L u p u s
Lupus Society of Alberta (Canada). “What Is Lupus? An Animated Explanation” http://www.lupus.ab.ca/viewpage.asp?p=resources-flash (animated cartoon on what happens in lupus—amuses and informs).

Quackwatch: Your Guide to Quackery, Health Fraud, and Intelligent Decisions. www.quackwatch.org (information about fraud, scams, alerts about unsubstantiated medical claims)

Tips on Internet Searching

The Internet is a source of such endless information that the only problem is sorting the good information from the bad. Some useful tips: The boxes at the side of the page are paid for, so their sponsors (who are ad-vertisers) may have an axe to grind. The suffix “.org” implies a charity or an organization whose primary focus is not commercial. The suffix

“.edu” implies an academic or educational site, likely to be well informed but possibly narrow or esoteric in focus. Beware of jazzy, all-singing, all-dancing sites. They probably aren’t serious. If you haven’t yet found the impressive search engine Google, try it (www.google.com).

If you don’t have online access at home, go to the public library and browse for free. Information, support, and the experience of other people with lupus are all waiting out there to be shared.

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Index

A

tom, 1, 39.
See also
inflammation

acupuncture, 88

aspirin, 60–61

age, 17, 20–21

autoimmune diseases: description

agoraphobia, 54

and types, 5–6, 46–47; drug

allergies, 53–54, 79, 83–84, 88

treatments for, 71–73; and family

alopecia (hair loss), 9, 39, 51–52

history, 54; and MHC markers,

alternative medicine, 87–88

28; and smoking, 35; and viruses,

American Autoimmune Related

31–33

Diseases Association, 37

avascular necrosis, 96–99

American College of Rheumatology

azathioprine, 72, 105

(ACR), 38, 44, 48–51, 52, 110

anemia, 9, 12

B

Anne, Queen of England, 102–103

Behrens, Timothy, 119

antibiotics, 53–54, 74, 100

Biett, Laurent-Théodore, 21

antibodies, 49–51, 114–115.
See also

birth control pills, 109–110

antiphospholipid syndrome

bisphosphonates, 75

(APS)

Blau, Sheldon Paul: butterfly rashes,

anticardiolipin (ACL), 104

39; contraception warnings, 110;

Antidepressant Era, The
(Healy), 59

statistics, 14; supplements, 88,

antimalarial drugs, 21, 65–68, 105

113; viruses as cause, 32–33

antinuclear antibodies (ANA),

blisters, 9–10

50–51

blood clotting (thrombosis), 20, 62,

antiphospholipid syndrome (APS)

75, 103–104

(Hughes’ syndrome): and Anne,

blood pressure, 73, 74, 87

Queen of England, 102–103; and

blood pressure medications, 99–100,

contraception, 110; drug treat-

106

ments for, 22, 75; identification

blood tests, 13, 22, 47–51, 100–101,

of, 22, 49–50, 104; and LSE,

107–108

94–95; and miscarriages, 49, 53;

bromocriptine, 112–113

symptoms associated with, 103,

Bush, George H. W. and Barbara, 34

104

butterfly rashes, 4, 9, 19, 39.
See also

apoptosis, 51

rashes

arthritis: contagiousness of, 13; and

gender, 20; and MHC markers,

C

28; osteoarthritis, 10–11, 96;

cats, 34

rheumatoid, 6, 61, 73; as symp-

Cazenave, Pierre, 21

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Po s i t i v e O pt i o n s fo r L i v i n g w i t h L u p u s
cells and cell death, 97

E

children, 19–20, 72

echocardiography, 95

cholesterol levels, 66, 74–75

eclampsia, 107

chronic fatigue syndrome, 92

edema, 12

claustrophobia, 54

endocarditis, 94

cognitive behavioral therapy (CBT),

environmental triggers, 23, 30–36

83

Epidemics
(Hippocrates), 111

connective tissue diseases (CTDs),

European Working Party on Sys-

6, 89–90

temic Lupus Erythematosus,

contraception, 109–110

19, 20

core decompression, 98

exercise, 81–82

corticosteroids, 60, 68–71

COX-2 inhibitors (coxibs), 62–63

F

cyclophosphamide, 72, 106

fatigue, 12, 77–78

cyclosporin, 72, 73

fats, dietary, 84–85

cystitis, 74

fibromyalgia syndrome (FMS), 9,

92–94

D

finger flexor tendonitis, 54

dehydroepiandrosterone (DHEA),

foods and nutrition, 83–87

29, 113–114

depression, 71, 81–83

G

Devey, Madeleine, 118–119

gender, 2, 16–17, 20, 28–30

diabetes, 5–6, 30, 70

Graves’ disease, 34

diagnosis: criteria for, 38, 48–51,

growing pains, 25, 53

52–55; difficulty of, 6; history of,

21–22; and laboratory test accu-

H

racy, 40; medical labeling and,

hair loss, 9, 39, 51–52

6–7; methods of, 41–43; and

Hargraves, Malcolm, 22

skepticism, 37–38; statistics

headaches, 41, 53, 93

and, 16

Healy, David, 59

diet, 83–87

heart and circulatory system: blood

discoid lupus, 1, 9, 20, 39

clotting (thrombosis), 20, 62, 75,

diuretics, 74, 86

103–104; cholesterol levels, 66,

dogs, 34–35

74–75; coxibs and, 62–63; de-

drug-induced lupus (DIL), 20–21,

fects causing headaches, 93;

36, 99–101

function and assessment of, 95;

drugs (medications): aggravating

lupus-associated diseases of,

photosensitivity, 80; allergic re-

12, 20, 40, 94–96; and smoking,

actions to, as lupus symptom,

75; symptoms involving, 11,

53–54; inducing lupus, 20–21,

12–13, 40

36, 99–101; as treatments (
see

herbal treatments, 87–88

treatments, drug)

herpesviruses, 31, 32, 74

Hippocrates, 111

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I n d e x

1 3 3

Holmes, Fredrick, 102

Lupus: The Facts
(Hughes), 52, 53

hormones, 29–30, 68–69, 106

lupus anticoagulant (LAC), 104

Hughes, Graham: on Anne, Queen

lupus (systemic lupus erythemato-

of England, 102–103; antibody

sus): causes of, 23–24; conta-

identification and APS, 22,