“Lupus Initiative” a dream of the lupus patients, the clinicians, the paramedicals, the social workers rather of every proactive man and woman is going to be materialized with the idea to educate and develop awareness among the lupus patients and to develop support group for the psychosocial rehabilitation of the patients. YES, we the proactivists want to develop a well functioning unit, the Lupus Initiative like the Lupus Foundation/Lupus Society of the developed countries where the lupus patients actively participate for the development of their own.
What is Lupus?
Lupus is the Latin word for “Wolf”. The term has been associated with the disease since the 10th century. It is speculated that the name was given to describe the skin lesions (sores) which typically are red and perhaps at that time in history were thought to resemble bite of wolf. Lupus, commonly called SLE (Systemic Lupus Erythematosus) is a disorder of the immune system, known as auto immune disease. In this disease the immune system produces antibodies which work against healthy cells leading to inflammation and damage to various body tissues.
It can affect any part of the body, including skin, joints, blood vessels, kidneys, heart, lungs and brain. Lupus is characterized by phases of illness or flares (when it is aggravated) and wellness or remissions (when it is dormant or subsided).
Some common symptoms are – unexplained fever, painful /swollen joints, muscle pains , extreme fatigue, facial rash, kidney problems, loss of hair, neurological problems etc.
How a Lupus patient feels
When a Lupus patient comes to know about it he/she becomes very depressed and thinks that from now they will have to wait for an early death only.
But the fact is that, now it can be very successfully treated with appropriate drugs and patients can lead active healthy lives with proper support and guidance from experts.
Hopes for Lupus patients
Patients have to learn to live with Lupus, as it is possible with diseases like diabetes. The important factors are – keeping touch with the doctor, practical and emotional support from near ones or support group, positive attitude and maintaining a healthy lifestyle. In other developed countries like USA there are support groups to assist Lupus patients emotionally and practically. But in India Knowledge and awareness about Lupus is very less, which adds to the suffering and helplessness of the patients.
Lupus Initiative is now ready to support Lupus patients
This is the first ever approach in Eastern India to form a platform to share the problems of Lupus patients and support them emotionally and socially so that they do not despair and feel left out. Finally, it will enable them to lead a normal active life. We invite everyone who is interested to provide voluntary service by joining Lupus Initiative.