lupusunderground

ISBN 0-9763428-0-4

Perfect Bound Acid-Free 6" x 9" Paperback
117 Pages
5 Illustrations, b&w

Lupus Underground Includes:
A Reference for Lupus
UVA1 Phototherapy Research
1987-2003

$23.95 USA
$29.00 Canada
£13.00 UK

FROM LUPUS UNDERGROUND

Hugh McGrath, Jr., MD:

“Although joint pain, photosensitivity, skin rashes, mouth ulcers, headache, depression and insomnia respond to UVA1 therapy, the most gratifying response for the patient has been the loss of fatigue. This observation has heightened our own awareness of fatigue as a major source of disability in lupus. Moreover, along with the favorable responses to headache, depression and insomnia, it suggested that UVA1 irradiation may be dampening abnormal central nervous system disease activity."

Lynn,
a UVA1 patient for 13 years:

“My energy was non-existent. My kids would wake me up, I’d make them breakfast and go back to bed. They’d wake me up for lunch, make that, and go back to bed. I couldn’t even empty my dishwasher all at one time...At first, the treatments were five days in a row for three weeks. After the second week, I was a new person. It was incredible."

Fredrick Urbach, MD:

“The trouble with UV is that most people don’t know what they’re talking about.”

LUPUS/UVA1
Research/Editorial
UPDATES

January 21, 2008
New York Times Health Guide
Reviewed by Harvey Simon, MD
Harvard Medical School

"Systemic Lupus Erythematosus:
Investigational Treatments"

"UVA-1 Phototherapy.
A promising treatment uses ultraviolet A-1 (UVA-1) radiation, long UVA wave lengths that do not promote sunburn and may actually block inflammatory immune factors..."

(Editor's Note: We believe this to be an overly modest review, but it's a beginning)
~
February 14, 2008
Overabundance of Immune Cells Might Trigger Lupus

Study spots overactivity of genes that prevent cell death in those
with autoimmune disease

"Researchers from Saint Louis
University report that a pile-up of superfluous immune cells might contribute to lupus, a finding which could point to new therapies for the autoimmune disease."
U.S. News & World Report

(Editor's Note: The immune cell research
reported above explains how & why UVA1 phototherapy is thought to work)
~
June 5, 2006
New Treatment for Lupus Brought to (UVA-1) Light

"UVA-1 phototherapy can be an effective and safe adjuvant therapy to the traditional pharmacological therapies in SLE patients."

"Devices for administering therapeutic doses of UVA-1 are available in Europe but not yet in the US. However, the US Food and Drug
Administration Office of Science and Technology conducted UVA-1
phototherapy studies in an SLE mouse model in 1997 'to prepare for future reviews of UVA-emitting tanning devices for such clinical applications.' "

"Some lupus patients are already taking things into their own hands. In 2004, journalist and lupus patient Anthony DeBartolo published
Lupus Underground, a widely read book detailing his own interest in and construction of a UVA-1 device for less than $5000."
Musculoskeletal Report
~
March 7, 2006
Editorial - Light therapy (with UVA-1) for SLE patients: Is it a good or bad idea?

S. Pavel
University Medical Centre, Leiden,
The Netherlands
Rheumatology 2006;45(6):653-655
~
April 12, 2005
Ultraviolet-A1 phototherapy modulates Th1/Th2 and Tc1/Tc2 balance in
patients with systemic lupus erythematosus

"Conclusion - According to the literature, IFN- has a pathogenic role in the development of SLE. We observed a decreased proportion of IFN--secreting cells, which we think is presumably one of the beneficial effects of UVA1 therapy. On the basis of our study, UVA1 phototherapy does seem to be an effective adjuvant in the treatment of SLE patients.

A. Szegedi, E. Simics, M. Aleksza1, I. Horkay, K. Gaál, S. Sipka1, J.
Hunyadi and E. Kiss
University of Debrecen,
Debrecen, Hungary
Rheumatology 2005 44(7):925-931
~
November 11, 2004
UVA1 Light Useful as Adjuvant Therapy for Systemic Lupus Erythematosus

A new study by Dutch researchers has found that UVA1 light therapy significantly decreases validated disease activity indices in patients with moderately active systemic lupus erythematosus (SLE) without causing significant adverse effects.
Polderman MCA, et al.
Rheumatology. 2004;43:1402-1404

LUPUS UNDERGROUND
A Chicago reporter stricken with lupus gives himself the assignment of finding a way back on his feet. After spending nearly 2 1/2 years researching and exactly $4,934.48 on tanning equipment (that’s right, sun tanning equipment), he files this report on a long-ignored, drug-free, non-patentable, counter-intuitive therapy that actually worked -- UVA1 Phototherapy.

FROM THE INTRODUCTION

If the demonstrated potential of UVA1 light to improve the lives of lupus sufferers were more publicly known, if research concerning both benefits and risks were accurately presented, if critics were fair, if our pharmaceutical industry didn’t hold excessive power over medical research and practice...Lupus Underground would not have needed to be written. If UVA1 light didn’t alleviate fatigue, it wouldn’t have been.

DOWNLOAD complete Introduction and
Contents page as a PDF.
May require download of free Adobe Acrobat Reader

ABOUT THE AUTHOR

Anthony DeBartolo is a Chicago-based journalist who has frequently contributed to the Chicago Tribune. His feature work has also appeared in daily newspapers across the U.S. and in Canada, including the Baltimore Sun, Chicago Sun-Times, Orlando Sun-Sentinel, Sacramento Bee, St. Louis Post-Dispatch and Toronto Star.

BOOK REVIEW
from the American Autoimmune Related Diseases Association's newsletter, InFocus, March 2005:
"Lupus Underground, by Anthony DeBartolo, is billed as 'a patient’s case for a long-ignored drug-free non-patentable counter-intuitive therapy that actually works.' Readers of the September 2003 issue of InFocus learned of research being carried out at Louisiana State University by Hugh McGrath, M.D., in which ultraviolet A-1 light therapy was being used to treat lupus patients. DeBartolo, lupus patient and newspaper reporter, goes looking to Dr. McGrath and others for the facts behind this therapy and, in the process, finds help for his own problems. Sometimes easy to read, sometimes very technical, but largely encouraging, this is, as the author states, 'a reference for lupus UVA1 phototherapy research.' It is well referenced – and not your usual lupus book."

POST-KATRINA
BOOK UPDATE
Along with many others,
Dr. McGrath's life & work in New Orleans were severely disrupted by Hurricane Katrina. As a result, his Louisiana State University Medical School contact information published in Chapter 5, Page 53 is no longer valid.
We are, however, very pleased to inform you Dr. McGrath is back at work at a new medical school.
While patients with questions regarding Dr. McGrath's research work are strongly encouraged to read this book, physicians can contact him directly at this address:
Hugh McGrath Jr., MD
Rheumatology, Department of Medicine
Tulane University Medical School
SL-57
1430 Tulane Avenue
New Orleans, LA 70112

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Lupus Underground: A Patient's Case for a Long-Ignored, Drug-Free, Non-Patentable, Counter-Intuitive Therapy that Actually Works
Includes A Reference for Lupus UVA1 Phototherapy