Health Organization When You Have Been Given a Lupus Diagnosis

By Laura Heuer

Expert Health Organizer/Consultant

Answers by Dawn EIsherwood RNHealth EducatorLupus Foundation of America, Inc

Q- First can you tell me how long it usually takes to get an actual Lupus diagnosis?

A- Unlike other chronic illnesses, trying to reach a diagnosis of lupus isn’t always easy. It can take months or even years for the doctors to put together all of the information that is required to make a firm diagnosis of Lupus. However, today’s physicians have more precise techniques and tests to detect signs of disease. How ever there are many challenges in confirming that a person has lupus and not some other disease. Lupus is known as “the great imitator,” because its symptoms mimic many other illnesses. Also, lupus symptoms can be unclear, can come and go, and can changes.Therefore, a lupus diagnosis is made by a careful review of your current symptoms, your laboratory test results, your medical history, the medical history of your close family members (grandparents, parents, brothers and sisters, aunts, uncles, cousins.

Q- Are there any tell tale signs of Lupus?

A-Symptoms of SLE may include: Extreme fatigue , Headaches, Painful or swollen joints, Anemia (low numbers of red blood cells), Fever (over 100 F), Hair Loss, Mouth Ulcers, and a Skin Rash.Q- What are some steps you can take to help the process along if there are any in getting an accurate diagnosis?Open communication with your doctor about your symptoms and health status. Let the doctor know of your concerns and ask questions.

Q- What are some of the best tips you feel will help a patient once they have been diagnosed?

A- When you receive a diagnosis of a chronic illness such as lupus, many things about your life will change. One of the most important tools you have is yourself! Your own awareness is the key to successfully managing lupus. Your will want to be aware of: your particular symptoms and any changes in your health that could mean new symptoms; what you can do to help prevent lupus flares, and how to know if a flare is starting; and how to identify and control the sources of tension and stress in your life that often go along with chronic illness. Follow the instruction of your doctor. Take your medicines as prescribed. Know when to seek help for drug side effects or new symptoms that might be related to your lupus.

Q- How to you feel is the best way to get your family and friends to understand your diagnosis?

A- Family life will inevitably change when a family member receives a diagnosis of lupus. Good communication will be crucial in making sure that home life remains as normal as possible after you are diagnosed with lupus. Sharing information about the illness, including its symptoms, its treatment, and its prognosis, can lessen everyone’s fears and concerns. The most important thing you can do is let family members know the extent of your pain and fatigue. This will help them know when they need to chip in.

Q- If you have received a Lupus diagnosis where can someone go to on the Internet for more information?

A- For more information on Lupus go to the Lupus Foundation of America web site at www.lupus.org . This web site will give you information on lupus and how to contact the foundation to receive printed fact sheets or to talk to the Health Educator.
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