Lupus Information & Resources

Lupus SLE - Systemic Lupus Erythematosus

....hard to say - harder to live with....  

Read about Lupus patient's experiences with the lupus disease and other chronic autoimmune diseases. We hope to improve the quality of life for people affected by Lupus and to promote efforts for the diagnosis, treatment, prevention and cure for Lupus.

Highest Recommendations:

I am a firm believer in Omega 3 Fish oils for minimizing my Lupus symptoms, and, although I do take fish oil supplements daily, I also switched to a diet of mostly fish only about three years ago.

The results are fascinating -- and I saw (and am still seeing!) improvements in my quality of life, much less pain, inflammation and fatigue, which I find, are some of the most debilitating symptoms of lupus.

I went from being severely affected by Lupus in my daily life to actually joining the gym and noticing a huge difference in what I could do, simply by increasing my intake of fatty fish such as salmon, tuna, mackerel, lake trout, herring, sardines. ect. Learn more ...

Since I don't get outside much ( especially not in the summer sun) I was fortunate enough to find an online store where I order all of my fresh fish requirements, monthly. Whispy.com has now partnered with Mike Mondello's SeaBear Smokehouse in order to educate our Internet audience about Omega 3 fish oils and the great benefits and to provide the best fresh seafood in the US at special discount prices.

 I've also posted several of my favorite seafood recipes in our Community Recipe Collections.

If you are not able to get enough Omega 3 in your diet through fish alone, you may want to discuss the possibility of supplementing your diet with a quality Omega 3 soft gel with your local health care professional.

Over the past 40 years, an increasing number of physiological functions have been attributed to omega-3 fatty acids, including movement of calcium and other substances into and out of cells, relaxation and contraction of muscles, inhibition and promotion of clotting, regulation of secretion of substances that include digestive enzymes and hormones, control of fertility, cell division, and growth. In addition, omega-3 fatty acids may play an important role in brain development and function. Some evidence has suggested that omega-3 fatty acids in the diet may protect against heart attack and stroke, as well as certain inflammatory diseases like arthritis, lupus, and asthma. The major dietary sources of omega-3 fatty acids in the U.S. population are fish, fish oil, vegetable oils (principally canola and soybean), walnuts, wheat germ, and some dietary supplements.

Website: --->  Lupus Survival Guide

Patricia created this website because she wanted to help others in our situation to cope with the many stresses this disease puts upon us. From constant pain to just having no energy at all, although you have the desire to move about, your body is in constant protest. There’s the feeling of hopelessness and helplessness. This site will show you how she manages to deal with these conditions and her only hope that when you read this, that the suggestions bring a sense of comfort to you. She also provides links to some of her favorite sites to visit.

Lupus Websites

• Naturopathy/ Holistic Medical Treatment - Naturopathic doctor with over 25 years experience specializes in difficult to cure conditions using therapeutic doses of liquid botanicals. Don't get drugged, get cured.
• Options To Infertility Using Surrogate Mothers - Surrogate Alternatives specializes in third party reproduction through Surrogate Parenting. Surrogate Alternatives has helped many happy families with their dream of having a child.
• Lupus & Eczema Health Information - Info about Lupus - Skin Disorders and symptoms & treatment
• New Discovery Brings Hope For Lupus - Clinical studies have revealed the cause of Lupus, and have led to a new safe and effective treatment. Free Report.
• Eliminate Pain & Gain Energy With Seacure - Extraordinary benefits from Seacure. Easy-to-absorb protein of nearly 100% assimilable nutrients naturally derived from deep-ocean white fish. These protein elements,essential to proper hormonal,immune,and neurological functions are easily absorbed.
• About.com - Lupus - Directory of news, information, and support for patients with this disease.
• Alliance for Lupus Research - Offers information about the organization, current research and treatment, FAQs, links, and contact details.
• Arthritis Insight-Lupus - Symptoms, treatment, information and support.
• Chinese Traditional Medicine - Describes treatments from practitioners in China so with TCM herbal products and herbs. Information about books, qigong, tuina and acupuncture included.
• eLupus.com - Educational information with mind/body and holistic healing approaches and product sales.
• Faces of Lupus - See the faces of the real people affected by this illness.
• Genetics of Systemic Lupus Erythematosus Family Study - Open research study at University of Minnesota seeking multiple family members with systemic disease to investigate why certain women are prone to this illness through identification of inherited genetic factors.
• Hamline University - Lupus - Disease facts, symptoms, treatment and coping strategies hosted by Hamline University. Link to the alt.support.lupus newsgroup.
• Hospital for Joint Diseases - Lupus - By H Michael Belmont, MD, Rheumatologist, specialist in the treatment, research, and the care of affected patients. Also book sales.
• La Jolla Pharmaceutical Company - Lupus Health - Find information and facts about systemic disease and learn how you can be part of a clinical trial.
• Mama's Health - Lupus - Learn about disease types, prevalence, and treatment.
• Mohan Research Laboratory - University of Texas - General information about Lupus and specific research regarding the genetic and environmental causes of SLE.
• NCERx - Clinical Trials - Discusses clinical trials and recent advances in treatment, including a combination of drugs and Chinese herbs.
• Neurological Sequelae of Lupus - Information sheet compiled by National Institute of Neurological Disorders and Stroke.
• Northwestern University - Clinical research team from Northwestern University Medical School describe current research, summarize findings, and answer frequently asked questions.
• PRISM - Lupus research and information - Randomised controlled trial into the treatment of systemic disease using mycophenolate mofetil.
• ProHealthNetwork.com - Lupus - Read the latest Lupus treatment information and news. Post messages to other visitors who have Lupus in our chat room and message boards.
• Suite101.com - Lupus - Includes information, with articles written by a nurse who has the disease. Offers ask a question area and a chatroom.
• Sun Protection in Lupus - Sponsored by Lupus Canada with information on UV sensitivity.
• TipsOfAllSorts.com - Lupus - Overview of the types of disease, nutrition and alternative therapies, and proposes a "battle plan".
• Ultraviolet Light and Lupus - An article sponsored by Lupus Foundation of Ontario with information on interactions of UV light and Lupus.
• University of Oklahoma - Lupus Multiplex Registry and Repository - NIH sponsored repository to recruit and store multiplex family DNA for current and future studies.
• Veritas Medicine - Lupus - Perform a personalized search to find ongoing clinical trials that match your needs.
• WellnessBooks.com - Lupus Resource Center - A guide to resources, including medical news, articles and information, message boards, books, directory of related sites. Also has sales of books.

Lupus Websites UK

Lupus International (www.lupusinternational.com)
The primary function of Lupus International is to eradicate lupus by supporting lupus research, alleviating suffering for lupus patients through patient services and effecting early detection of undiagnosed cases through awareness promotion.
Lupus Canada (www.lupuscanada.org)
Information about Lupus Canada, its Member Organizations, and lupus.
Lupus Society of Alberta (www.lupus.ab.ca)
A member of the Lupus Canada organization serving Alberta Canada. This site has a flash and text version of an animated explanation of lupus.
The Lupus Foundation of Ontario (www.vaxxine.com/lupus)
A member of the Lupus Canada organization serving Ontario Canada.
European Lupus Erythematosus Federation (www.elef.rheumanet.org)
Established in 1989 the Federation includes the following countries: Belgium, Finland, France, Germany, Iceland, Ireland, Israel, Italy, Netherlands, Norway, Portugal, Spain, Sweden, Switzerland and the United Kingdom.
LUPUS UK (www.lupusuk.com)
LUPUS UK is a national charity founded by lupus sufferers to assist those who have lupus and those who support them. Office in Romford, Essex.
North East Lupus Group (www.kitzbuhel.demon.co.uk/lupus)
This site provides details of its activities in north eastern England as well general information on lupus, the charity LUPUS UK, and its various publications and factsheets. A local chapter of the LUPUS UK organization.
West Midlands LUPUS UK (www.westmidlandslupus.co.uk)
Lupus information and support for those living in the West Midlands area of the UK. A local chapter of the LUPUS UK organization.
Lupus Help (http://webrheum.bham.ac.uk/lupus/intro.html)
An information source primarily for the patients visiting our clinic, (The University of Birmingham, England Department of Rheumatology) and for those throughout the UK.
St. Thomas' Lupus Trust Charity (www.lupus.org.uk)
This charity funds lupus research at St Thomas' Hospital in London.
Victorian Lupus Association (www.lupusvic.org.au)
Provides information about The Victorian Lupus Association in Melbourne, Australia.
Lupus Association of New South Wales (www.lupusnsw.org.au)
Lupus information and support for those in New South Wales, Australia.
Lupus Association of Tasmania (www.hotkey.net.au/~lupustas)
Promoting and supporting research designed to discover the cause of, and a cure for, lupus and related auto-immune diseases. Located in Launceston, Tasmania, Australia.
Lupus Association Singapore (home1.pacific.net.sg/~lupusas)
Includes English and Chinese versions, this site supports those with lupus. Office located in Balestier Estate, Singapore.
Korean Lupus Support Group (KLSG)
(http://members.tripod.com/%7EKoreanLupus/)
Lupus information and support from Seoul, Korea.

Lupus on RemedyFind (www.remedyfind.com/hc-lupus.asp)
RemedyFind is a free, unbiased site (not sponsored by drug companies etc.) where individuals can rate the effectiveness of the Lupus treatments they have tried.
We Have Lupus (www.wehavelupus.com)
Lupus support group, with a free message board.
Joanne's Lupus Page (www.uklupus.co.uk)
Contains information about lupus, medications, tests, symptoms, and also has a message board and a chat room.
The Butterfly and The Wolf (http://denim.bbboy.net/thebutterflyandthewolflupusforums)
A friendly and informative site dedicated to the support and education for those suffering from Lupus and/or Fibromyalgia and their families/friends. Come see who we are...read, share, look around, join. Many forums with lots of info and including forums for relaxation and fun, family support center, other site links and more.
Menopause and Black Cohosh Center
(www.menopause-black-cohosh.org)
Contains information on menopause and black cohosh you won't find anywhere else. Also, find valuable information on hormone replacement therapy and the latest menopause research.
Diabetes Directory (www.allofdiabetes.com)
Your one-stop destination having anything to do with diabetes. This Diabetes Directory is designed to help its users find the diabetes information, source, companies, products and services.
Lupus JIE
(www.lupusjie.com)
This lupus site has the most extensive lupus directory. Along with many articles on the disease.
Arthritis and Glucosamine Information Center
(www.glucosamine-arthritis.org)
The Arthritis & Glucosamine Information Center contains quality information on arthritis and glucosamine, the latest glucosamine research, details on arthritis medications and treatments, and tips for effectively managing your pain.
National Institute of Arthritis and Musculoskeletal
and Skin Diseases (www.niams.nih.gov)
General information on lupus as well as a many other diseases.
Lupus Patients Understanding & Support
(www.lupus-support.org.uk)
Award winning site with plenty of lupus information.
Lupus Clinical Overview (www.cerebel.com/lupus)
Clinical look at lupus from a Rheumatologist who specializes in the disease.
Lupus Around The World (www.mtio.com/lupus)
Definitive Lupus information and support. Message board and chat room.
Suite 101.com - Topic Lupus
(www.suite101.com/welcome.cfm/lupus)Suite 101.com is the online writing and publishing community. This lupus site has up to date articles and a bulletin board.
Lupus Resource Center - HealingWell.com
(www.healingwell.com/lupus/)
Community and information resource site to medical news, informative articles, patient stories, community message boards and chat rooms, books, free email, free web pages, newsletters, links to related web sites.
Stories of Lupus (www.storiesoflupus.com)
A series of personal stories about people living with one of this country's most misunderstood diseases, lupus.
The Lupus Den (www.lupusden.com)
Information and recent articles on lupus as well as a forum to help others.
Arthritis Insight (www.arthritisinsight.com)
Easy to read factual information with lots of support from those with another autoimmune disease, arthritis. Includes tips for better living, the latest news and more.
Lupus: Alternative Therapies That Work (www.abouthealinglupus.com)
This site gives a short description of the book Alternative Therapies That Work. In it Sharon Moore shares effective natural healing techniques with other lupus sufferers.
Missouri Arthritis Rehabilitation Research and Training Center
(www.marrtc.org/)
Contains featured articles, news and research on lupus.
Learn Online Course - Living with Lupus - Expert Instruction (http://home.universalclass.com/i/crn/4223.htm)
This online course, Living with Lupus, is designed to help anyone learn to cope with daily living, seek out the best medical advice and work through the anger and grief that come with having lupus. Course fee is $15.00.
Lupus curing program, How To Cure Lupus? (www.curezone.com/diseases/lupus)
CureZone.com is educational not-for-profit web site. This site explains how you can be healthy again through diet, body cleansing and physical activity.
Tips of All Sorts (www.tipsofallsorts.com/lupus.html)
Books, articles and informative links on lupus.
The Lupus Chronicle(http://hometown.aol.com/pubpanda)
Lupus stories from people who live with the disease.
Fibromyalgia Friends & Family (http://fms-forum.com/)
Forum for exchanging information on Lupus, Fibromyalgia, Chronic Fatigue, Arthritis, Multiple Sclerosis, and more.

Brooke's Page (www.brookebowen.com/)
Brooke's personal lupus story that will give you an idea of how severe this disease can be. Brooke has seen almost every lupus symptom you could have.
Monica's Lupus (www.monicaslupus.co.uk)
Dedicated to Monica, who has suffered with Lupus for 30 years. Also includes hints and tips for people who may be embarking on the Lupus journey.
Follow My Lupus (http://followmylupus.com)
Brett's personal lupus story. He provides accurate information on medication for lupus and his lab results.
Living With Lupus (www.cookiebytes.8k.com/LivingWithLupus.html)
A site designed for people living with Lupus or other autoimmune diseases, and their family and friends, to find helpful links, information, support and hope.
Jaynee's Art and Lupus (http://painterjayne.tripod.com/personalpageaboutmylupus.html)
Jaynee's health problems started back in 1973 and getting a proper diagnosis was hard.
Cyndee Miller's Lupus Home Page (www.public.asu.edu/~cyndee74/index.html)
Cyndee was diagnosed with lupus in 1966. Her site details her life from diagnosis to present day and is dedicated to lupus awareness.
For Life - Stories of Lupus (www.morestoriesoflupus.com)
Learn about the six people who were featured on the award-winning documentary "Stories of Lupus".
Jennifer's Lupus Links (www.2access.net/users/leed/lupus)
Lists sites dealing with lupus.
Angelic Angie's Lupus Site (www.angelicangie.com/survivor.htm)
Angela's site provides comfort to those who have lupus.
Lupus: Support and Survival (www.itzarion.com/lupusgroup.html)
Brenda's site provides much information on lupus as well as her own personal story.
KC's Lupus Pages (www.ghg.net/schwerpt/mypage.htm)
Also known as "Kitty Cat", Karen explains her personal lupus story as well as extensive lupus information links and a guest book.
Lupus: My Story and My Links (http://members.tripod.com/~lupus_story/index.html)
Kathie's personal lupus story and her list of lupus related links.
Surviving The Wolf (www.geocities.com/lynmom59/)
Includes a guestbook, stories, prayers and poems about living with lupus.
Annette Leach and Shawna Gilbreath Memorial Web Page (www.geocities.com/lupus_page)
I personally found this site a most touching site dealing with death caused by lupus.
Sandy's Lupus (http://members.tripod.com/~RoseLuvLady/index.html)
Sandy's personal lupus story and lots of good lupus links.
The Lupie Bin (http://members.aol.com/lupiebin/index.htm)
This site has chat rooms, message boards, a guest book and lots of lupus information. Also has information on herbal supplements that need to be avoided by those with lupus and other autoimmune diseases.
Missed Abilities (www.missedabilities.com)
The newest site on lupus. Mary explains her lupus experiences and gives others with the disease a chance to add their story.

Books that I have read which HELPED along the way ...

LUPUS HANDBOOK FOR WOMEN by Robin Dibner

The Lupus Book by Daniel J. Wallace