Education
WHAT IS LUPUS?
Lupus is a chronic (lifelong) autoimmune disease that causes inflammation and tissue damage to virtually every organ system in the body. Lupus can affect many parts of the body, including the skin, joints, blood and blood vessels, heart, lungs, kidneys and brain. The health effects of lupus range from mild to life-threatening and the disease vacillates between periods of increased activity, called flares, and periods of remission. Lupus can be particularly difficult to diagnose because its symptoms are similar to those of many other illnesses, and major gaps exist in understanding the causes and consequences of lupus. More than half of all people with lupus suffer four or more years and visit three or more doctors before obtaining a correct diagnosis.
About Diagnosis
- More than half of all people with lupus suffer four or more years and visit three or more doctors before obtaining a diagnosis.
- Lupus is difficult to diagnose because common symptoms mimic other illnesses.
SYMPTOMS OF LUPUS
Achy joints (arthralgia); Fever more than 100 degrees F; Arthritis (swollen joints); Prolonged or extreme fatigue; Skin rashes; Anemia; Kidney involvement; Pain in the chest on deep breathing (pleurisy); Butterfly-shaped rash across the cheeks and nose; Sun or light sensitivity (photosensitivity); Hair loss; Abnormal blood clotting problems; Fingers turning white and/or blue in the cold; Seizures; Mouth or nose ulcers IF YOU OR SOMEONE YOU KNOW HAVE 4 OR MORE OF THE ABOVE SYMPTOMS, PLEASE SCHEDULE AN APPOINTMENT WITH A RHEUMATOLOGIST
About Treatment
- Many of the current therapies for lupus are toxic and can cause other health problems.
- Lupus is a complex disease that can affect multiple organs and requires treatment by medical specialists who are experienced in managing lupus.
Our Purpose: Lupus Foundation of America, Kansas City Chapter, Inc. is to support research to find the cause of and cure for lupus and to serve the needs of those with lupus, their family members, friends and co-workers. This mission driven purpose is achieved in many ways for the general public and those affected by lupus including: mailing information packets, educational meetings and seminars, newly diagnosed presentations, physician referral, support groups, educational brochures and books, disability information, referrals for resources (anything from dentists to window tinting laws to wigs to social services, etc).
Seminars, Lupus Learning’s, Presentations, and Health Fairs
Seminars:
The LFA, Kansas City Chapter offers an annual Lupus Awareness Spring Seminar. Our seminar always presents the latest information in research, treatment, diagnosis, coping and management of lupus. The information is presented by health care professionals who work with those with lupus. Our 16th annual spring seminar will be held in spring 2008.
Lupus Learning’s (2 hour educational events that are “topic specific” presentations):
Lupus learning’s are 2 hour presentations that are “topic specific”. We have hosted these events in Wyandotte, Leavenworth, Miami, and Johnson Counties in Kansas and in Jackson, Johnson, Platte, Cass, Henry, Carroll, and Boone Counties in Missouri. Each event is held in a public location, able to move thru all counties served and is an opportunity for those affected by lupus to learn about lupus thru experts in health, law, resources and social services. This event is geared for anyone affected by lupus.
Newly Diagnosed Lupus programs are 2-3 hour programs for those diagnosed with lupus for 0-3 years.
The purpose of this program is to help those newly diagnosed come to terms with the diagnosis, explain the disease process, treatment plans, disease management, coping skills and network of resources available for assistance to the newly diagnosed, family and friends. These programs are presented by an area rheumatologist. Each participant is asked to register for this free event to provide refreshments.
Presentations:
The LFA, Kansas City Chapter will gladly give presentations on lupus for your workplace, church, sorority, fraternity, social groups, neighborhood association or school. Please contact the office and we will come out and discuss per the parameters necessary to have a passionate, informative presentation to help anyone understand there is more to lupus than you know and it can be a life threatening disease with severe complications. If you would like one of us to come to your work place, please call 816-761-0850 / 866-761-0840 or info@lifewithlupus.org.
Health Fairs:
The LFA, Kansas City Chapter will gladly participate in your organizations health fair all you need to do is email, fax or mail the date, time, and location. Currently we do not participate in health fairs with a cost for the booth or table. 816-761-0850 ph / 816-361-0446 f / email is info@lifewithlupus.org.