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SLE (Systemic Lupus Erythematosus) is a chronic immune-mediated disease affecting typically females of childbearing age and it can affect multiple systems in the body including skin, joints, kidneys, blood counts, neurological system, heart, etc. in varying combinations. However, it is important to remember, SLE is unique in each individual and has widely varying clinical presentation.

Systemic Lupus Erythematosus: Advice for caregivers and SLE patients to lead a ‘near normal’ life (Image by wirestock on Freepik)

In an interview with HT Lifestyle, Dr Abhishek Patil, HOD and Consultant – Rheumatology at Manipal Hospital in Bangalore’s Old Airport Road, shared, “Work closely with your rheumatologist to develop an individualised treatment plan and strict adherence to medical advice is mandatory. A few general tips that are applicable to all patients with SLE to keep the disease in low activity include regular exercise, and a balanced diet rich in fruits, vegetables, and lean proteins. Avoidance of tobacco and sun protection using sunscreen, caps, and protective clothing are crucial. Emotional support to the patient is vital for the patients and caregivers alike. Seek counseling, join support groups, or engage in activities that promote relaxation and self-care. Maintaining a positive mindset can help cope with the challenges of living with SLE.

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Concerned that the disease has a social stigma attached, apart from its medical complications, Dr Abhishek Patil said, “Since it typically affects women during the peak of their reproductive life, there is a widespread myth that patients with SLE cannot be pregnant. These stem from the fact that the disease itself and the medications used for the treatment can have an adverse effect on the health of the child and the pregnant mother. However, with the use of pregnancy-compatible medications and proper monitoring, it is possible to have a completely normal pregnancy even in patients with SLE.”

Dr Shailaja Sabnis, Consultant Rheumatologist at Nanavati Max Super Speciality Hospital in Mumbai, explained, “Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease where the immune system mistakenly attacks healthy tissues and organs. This can lead to a range of symptoms including joint pain, muscle pain, skin sensitivity to sunlight (photosensitivity), extreme fatigue, memory problems, headaches, behavioral changes and chest pain related to complications involving the heart or lungs.”

Since managing SLE often involves regular medical appointments for monitoring and adjusting treatment plans, Dr Shailaja Sabnis suggested, “Patients might require hospital admissions for severe flares, IV infusions for medications and consistent follow-ups to track the disease’s progression and manage symptoms effectively. Additionally, ongoing investigations such as blood tests and imaging studies are crucial to assess organ involvement and adjust treatment strategies accordingly. Patients and caregivers play a pivotal role in SLE management by adhering to treatment plans, maintaining a healthy lifestyle, managing stress and recognising early signs of flare-ups or complications. Support networks, including healthcare professionals, family and community resources, are essential for navigating the challenges of living with SLE and striving for an improved quality of life.”

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