Charla de Lupus Brochure (English)

Charla de Lupus (Lupus Chat)®

What is lupus?

Lupus, short for systemic lupus erythematosus, is a chronic illness that affects the immune system. Chronic means if you have lupus, you will always have it. Lupus is called an autoimmune disease because the body attacks its own healthy tissues. When working properly, your immune system helps your body fight off germs and disease. Lupus can affect any part of the body.

Symptoms may include painful or swollen joints, extreme fatigue, and skin rashes. Lupus can also cause problems you may not be able to see, such as damage to the kidneys, lungs, heart, brain, or nervous system.

Lupus is hard to diagnose because the symptoms can be vague and may seem like symptoms associated with other illnesses. We do know that you cannot catch lupus from another person, or give it to anyone else. It is not contagious. The illness is not a cancer, and it is not related to AIDS. Lupus can be very mild or life-threatening.

No two people have the same experience.

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What causes lupus?

We don’t yet know what causes lupus. It is possible that more than one factor is involved, including genes, viruses, and changes in the environment. There is not yet a cure for lupus. Early and proper medical care, however, is needed in order to control the complex symptoms you may face. The most important thing to know is that you did not do anything to cause your lupus.

“Thanks to Charla, I don’t feel alone in this battle.”

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You are not alone!

Lupus aects about 1.5 million people in the United States. The illness occurs among women nine times more than men and is more common among African American, Asian American, Latina, and Native American women. Although anyone can be diagnosed with lupus, it most often occurs among women between the ages of 15 and 45.

How do I know I have lupus?

It can take a long time for a person with lupus to get the right diagnosis, because lupus can look like many other diseases. Symptoms of lupus are dierent for each person. They may include painful and swollen joints, skin rashes, unexplained fever, chest pain, and extreme fatigue. Additional symptoms include light and sun sensitivity, hair loss, recurrent miscarriages, and changes in mood, thinking and memory. There may also be symptoms you cannot feel, such as low blood count or protein in the urine.

If you have several of these symptoms, either at once or over time, ask your doctor if you should be checked for lupus.

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How is lupus treated?

If your doctor thinks you have lupus, he or she may refer you to a rheumatologist. Rheumatologists specialize in treating lupus and related illnesses. If you have lupus, your doctor may prescribe medicines to help. Since lupus is different in every person, treatment is also different. Medicines may be mild, such as aspirin, to help control joint pain, or stronger, such as prednisone, antimalarial drugs, or chemotherapy. Learning how to manage stress, eating healthy foods, mild exercise, and avoiding the sun is also helpful.

Many people with lupus also use more traditional remedies, such as herbs and creams. If you use traditional remedies, please let your doctor know.

Some may interfere with the medicines your doctor gives you. In fact, talking with the doctor about ways to manage your lupus is an important part of your care.

“I find it valuable that we are able to learn new ways of coping with lupus and helpful tips to live a healthier lifestyle.”

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How can I cope with lupus?

The course of lupus is hard to predict. Some days you will feel well. Other days you may be in a “flare,” which means you have many symptoms. Lupus can be invisible and you may look fine. Even your closest friends, family members, coworkers, and others can have a hard time believing you are sick or fully understanding your illness. Also, sometimes lupus treatment itself can be tough on you, causing changes in how you look or in your mood.

There are many other challenges you may face with lupus. You may have to make some hard choices about issues such as pregnancy, working, and your family life. You may feel anxious, sad, angry, and confused.

If you are having some of these feelings, you are not alone. You can find help and support.

Many people with lupus turn to family members or other loved ones, health professionals, and respected spiritual and community leaders to help with coping. Many also try to learn as much as possible about the illness and treatment. This can help you to stay healthy and feel more in control of your body.

How does Charla de Lupus (Lupus Chat) help?

Charla de Lupus (Lupus Chat) provides support and education for people with lupus, by people with lupus in many ways. Hospital for Special Surgery started Charla de Lupus in 1994 to offer help with lupus for both English and Spanish-speaking communities.

Charla clients tell us that the program gives them a sense of empowerment and understanding about their lupus. Some reasons why clients use the program include: learning more about how lupus is treated; coping with lupus; talking with their doctor; family, pregnancy, and parenting issues; and feeling less alone.

As one Charla client said, “It’s really amazing connecting with someone else who has lupus… My peer health educator explained the illness to me in words I could understand.”

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Nationally and internationally, Charla offers: CharlaLine: This is a free telephone support and education service for people with lupus and their loved ones, offered in English and Spanish. CharlaLine is ideal for people who want to speak with someone else with lupus from the privacy and convenience of their home.

A booklet for teens with lupus: “For Inquiring Teens with Lupus: Our Thoughts, Issues and Concerns” is a 20-page booklet written by a young woman diagnosed with lupus as a teen. It highlights the specific issues that are important to teens living with lupus. These include the illness’ impact on school, dating, and parents.

Tips for coping and a list of teen resources are included.

Our website: To learn more about our services and how to get involved, visit us on the web at www.hss.edu/charladelupus. You will also find our photos, events, testimonials, and more resources.

Additionally, in the New York Metropolitan region, Charla offers: In-person help with lupus: Our Charla staff work with health care teams at several New York City rheumatology clinics.

Teen, Young Adult and Parent Support Groups: Our support group is a monthly, in-person service for teens, young adults and parents affected by lupus. These groups offer informal discussion, support, special activities and celebrations as well as guest speakers.

Participation in community health fairs: These events help us spread the word about lupus and our Charla program.

Educational presentations: We speak to the public about lupus in schools, churches, and other community settings.

To reach us, call Charla de Lupus at 212.606.1958 or 866.812.4494 toll-free from outside New York City.

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212.606.1958 or

866.812.4494 toll-free

www.hss.edu/charladelupus What can I do to help others who live with lupus?

You can make a difference! Talk to friends and loved ones about lupus and share this brochure. You can also ask Charla de Lupus to attend a health fair or present in your community.

If you or a loved one has lupus and you live in the NYC area, there are volunteer opportunities at Charla de Lupus. Please call 212.606.1958 for more information.

What else does Hospital for Special Surgery offer?

Hospital for Special Surgery provides world-class integrated lupus care and is the world’s leading institution for orthopedics and rheumatology. Our hospital is home to the Lupus and APS Center of Excellence, which aims to provide the highest quality care for patients with lupus and antiphospholipid syndrome (APS). Through our healthcare team, patients can access world-class medical care, including social work, nursing, research, and patient education programs.

More about the Charla de Lupus program: Charla de Lupus is offered by the Department of Social Work Programs at Hospital for Special Surgery. The mission of our program is to empower and enhance the quality of life for people with lupus through peers providing culturally relevant education and support.

Call Charla de Lupus at 212.606.1958 or 866.812.4494 toll-free.

You can also visit us at www.hss.edu/charladelupus With appreciation to our Charla staff and clients, whose photographs throughout this brochure helped to demonstrate the diverse faces of lupus, and how our program can help.

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