(LARC)
Resources for autoimmune disease sufferers.
Last Updated 6/08
L.A.R.C. is a resource center for patients, doctors, families,and the friends of those afflicted with Systemic Lupus Erythematosis and other Auto-Immune diseases including Fibromyalgia.
SLE (Systemic Lupus Erythematosis) is a serious, and progressively life threatening disease. Receiving an accurate diagnosis and appropriate treatment for SLE has proven to be elusive for many suffers of the disease, forcing them to endure years of frustration, isolation, and self-doubt.
This tragic situation is due in part to the nature of the disease, in that it can mask its identity in a series of seemingly unrelated symptoms, until such time that a person's major organs become involved and serious or fatal damage occurs.
Another reason the suffering continues is due to the lack of communication between the doctors and the patient, which fosters feelings of hopelessness and loneliness. Having nowhere to turn for CORRECT information, support, and assistance, makes dealing with a chronic illness an emotional roller coaster. There are as many deaths due to suicide among SLE patients, as there is deaths resulting from complications of the disease!
Patients are often told their symptoms are "functional" or "in your head" simply because neither the patient, OR THE DOCTOR have all the information necessary to obtain the correct diagnosis. It often takes years to get an accurate diagnosis. Many times this delay causes the families and the friends of the sufferer to distance themselves or even to start to believe themselves that the illness is indeed "all in the head". There are many MYTHS surrounding these diseases. It is IMPERATIVE that the sufferer seek several opinions, make sure that the doctors they are seeing are up to date on the latest information, AND they (the patient) surround themselves with a solid emotional support system. A delayed diagnosis can result in irreversible damage and/or DEATH.
L.A.R.C. provides the following services:
In-patient support, assistance, and visitation.
Informative articles from medical journals, University libraries, magazines, newspapers, etc. that relate to YOUR SPECIFIC CASE.
The latest research material as it becomes available.
Current information from around the world including services and treatments.
Information on alternative methods of treatments.
Medical Referral.
Current information on prescription drugs.
Assistance in OBTAINING the latest medical treatments.
Information on where to purchase protective clothing, sunscreens, dietary supplements, alternative "medicine", daily living tools, protective house/car screens, etc.
Education in exercise and nutrition.
Assistance in utilizing all resources available.
A Nationwide newsletter containing tips on daily living, how to cope, items of interest, "laughables," "Dear Edna", Energy saving techniques, tips and recipes, ANONYMOUS Q&A section, support group information, special activities, and speakers.
Individual meetings for ALL involved with Lupus or any other auto-immune disorder.
Support Groups now being formed.If you are interested in attending a support group, pls email me for information on a group near you.
Education to the General Public and the Medical Community on ALL aspects of the illness, both mental and physical. We will also provide workshops and training seminars for patients, doctors and family members.
Support available 24 hours a day.
EMAIL ADDRESS: larcdn@earthlink.net
We will put the patient and their family in touch with supporting agencies such as, but not limited to the following:
- National Kidney Foundation
- Sjogrens Syndrome Foundation
- Medic Alert
- Air LifeLine
- Angel Flights
- Nat'l Assoc. of Hospital Hospitality Houses, Inc.
- Arthritis Foundation
- Sjogrens Syndrome Foundation
- Nat'l Kidney Foundation
- Liver Foundation
- California Pharmacy
- Arthritis Associates, Redding, CA.
- Lupus Foundation of America
- Lupus Foundation of Northern California formally Bay Area Lupus Foundation (BALF)
- Stanford Medical Clinic- specializing in the diagnosis and treatment of auto-immune disorders.
- California Pacific Medical Center/Liver Transplant Unit
Dr. Fred Poordad, Dr. Robert Osario, Dr. Robert Gish
- UCSF-Rheumatology/Lupus Clinic
Dr. Lindsey Criswell
- S.O.A.R.
Immunology Specialists from Stanford University, located in the Bay Area
- Nutrition Specialist Dr. Ed Blonz
www.blonz.com