A diagnosis of lupus can be difficult news for a patient to receive; however, it can be as equally devastating to their loved ones. Caregivers will often face many mental and physical challenges after a diagnosis due to the unpredictability of the disease. Lupus is described as “unpredictable” because symptoms may present themselves differently in each person.
Experts suggest that one of the best pieces of advice a caregiver could use to overcome challenges is to develop an understanding of the disease. Through education they can become better prepared for difficulties that are likely to occur. Knowing the basics is a good start.
Here are 10 things a caregiver should know about lupus:
- What is lupus? – Lupus is a chronic disorder of the immune system. It affects over 1.5 million people in the United States. The disease causes the body to attack healthy cells and tissues. Lupus can incur damage to the joints, kidneys, heart, blood vessels, skin, brain and lungs.
- Who is most likely to get lupus?-The disease is most prevalent in women of color.
- What causes the disease? – Currently, the cause of lupus is unknown.
- What are some of the symptoms? – Symptoms vary by the individual. In some cases your loved one may experience: muscle or joint pain, fatigue, hair loss, fevers, rashes around the face, headaches, seizures or chest pain. The symptoms are sometimes referred to as lupus flares.
- How do I handle lupus flares? – Be aware of tell-tale signs such as tiredness, rashes or other symptoms. Contact your doctor right away, so that he can recommend the appropriate treatment. If flares are stress related, try suggested methods for stress reduction.
- Will lupus affect my loved one’s ability to remain active? – Lupus can impair your loved ones ability to move around, especially if there is a flare up around the joints.
- How can I help my loved one to stay on top of their health? – Encouraging healthy eating, exercise, taking nutritional supplements and maintaining regular checkups are vital.
- How can I be emotionally supportive? – The best advice is to let your loved one know that you are there for them and there to listen. A diagnosis or symptoms of lupus can sometimes lead to depression; be on the alert for signs such as a loss in interests, long term sadness or helplessness. If your loved one appears to be depressed, seek the help of a mental health professional as soon as possible.
- How can I maintain my own mental health? It is not uncommon for caregivers to experience bouts of depression as well. If you are experiencing symptoms, it is recommended that you see a mental health professional. However, if you are just experiencing mental tiredness or frustration you can try activities such as exercise or joining a support group.
- How do I maintain proper care for my loved one? Maintaining a continuous and communicative relationship with their physician is best. Because the disease is unpredictable you should communicate changes to the doctor. Based on information you provide, the doctor can develop a care plan for your loved one.
For more information about lupus, please contact The Lupus Center at Jamaica Hospital. The facility is staffed by expert rheumatologists from the Feinstein Institute for Medical Research and hosts various educational community outreach programs throughout the year. To schedule an appointment, call 718-206-9888 or the Lupus Hotline at 1-877-33 LUPUS.
All content of this newsletter is intended for general information purposes only and is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Please consult a medical professional before adopting any of the suggestions on this page. You must never disregard professional medical advice or delay seeking medical treatment based upon any content of this newsletter. PROMPTLY CONSULT YOUR PHYSICIAN OR CALL 911 IF YOU BELIEVE YOU HAVE A MEDICAL EMERGENCY.