What is LUPUS?
Systemic Lupus Erythematosus (SLE) or Lupus is a multisystem autoimmune disease characterized by loss of immunological tolerance to self nuclear antigens and aberrant autoimmune B & T cell responses causing organ damage.
SLE is a complex and challenging disease due to its serological complexity, clinical diversity (different types of disease manifestations) and multiple comorbidities (other associated diseases). Advances in understanding the mechanism and progression (pathophysiology) of lupus have changed the therapeutic landscape of this disease. Several drugs are available and many more are in the pipeline currently. The need of the hour is to strike a balance between early diagnosis, drug efficacy, availability and cost.
Do’s & Don’ts
1) Do take medication as advised,
2) Do visit doctors as needed or scheduled,
3) Do follow proper exercise
4) Do not follow a healthy and emotionally happy lifestyle
5) Do learn about Lupus
6) Do spread right information and awareness
Do’s & Don’ts
1) Do not smoke
2) Do not plan pregnancy without consulting doctors
3) Do not skip medicines
4) Do not skip routine visit to doctors
5) Do not believe in misconceptions and social stigmas
Misconception 1: Lupus is contagious
· Reality : It is not contagious
Misconception 2: Lupus only occurs in women and not in men
· Reality : Occurrence in women is more frequent and men do have Lupus.
Misconception 3: Only a butterfly rash is a sign of Lupus
· Reality : No; but it is a characteristic presentation.
Misconception 4: Lupus patients cannot get pregnant
· Reality : Absolutely wrong.
Misconception 5: Lupus patients are lazy
· Reality : Absolutely wrong.
Misconception 6: Sun exposure should be avoided if the patients develop rash
· Reality : Yes.
Misconception 7: Exercise if you have Lupus
· Reality : Yes.
Misconception 8: Lupus is uncommon
· Reality : Lupus is not so common.
Misconception 9: Only young struggle with Lupus
· Reality : Lupus can occur at any age.
Misconception 10: A lupus diagnosis is almost always deadly
· Reality : Absolute myth.
Pregnancy & Lupus
Lupus per se is not contra
indication for pregnancy.
But the pregnancy should be planned and regular visits to rheumatologists and gynaecologists are essential as a part of monitoring the disease activity so that appropriate measures can be taken at the right time.
The patient must be in a state of clinical remission or minimal disease activity.
All serological markers, specially Anti RO / LA antibodies and Anti phospholipid antibodies with Lupus anti coagulant and beta -2 glycoprotien antibodies must be done.
Pregnancy & Lupus
Pregnancy causes flare up of Lupus activities and this should be appropriately dealt with.
Patient with Lupus have higher risk of pre term birth increased caesarean section small for gestational age babies along with still birth. Pre-eclampsia and Ecclampsia are more common in Lupus mothers than in general.
Babies may suffer from a disease known as a neo natal Lupus syndrome. This is characterised by skin rashes and sometimes heart-blocks which poses an emergency. Anti RO / LA antibodies are supposed predisposed to this condition.
Child with Lupus
Ex-Professor & Head, Department of Medicine, Calcutta Medical College
Member of the Global Advisory Committee (COVID-19), Govt. of West Bengal
Past President, Indian Rheumatology Association (IRA)
Past President, Association of Physicians of India (API)
"It was an ardent necessity for someone, in the eastern part of the world, to rise, organize and consolidate the battle against Lupus. LIK rouse to the occasion and had been the placard bearer in educating clinicians, spreading awareness and most importantly, empowering patients with Lupus."
Professor & Founder of the Department
Clinical Immunology & Rheumatology
Christian Medical College & Hospital, Vellore, India
Past Editor in Chief, International Journal of Rheumatic Diseases
Past President, Indian Rheumatology Association
President-Elect, Ex-Vice President and Treasurer, Asia Pacific League of Associations for Rheumatologists (APLAR)
"Lupus initiative Kolkata (LIK) is marching ahead as a pioneer in rendering the helping hand to the lupus community for over a decade now. From free check-up, patient education to highly subsidised tests and dispensing of medicines, educational aid to nurture hidden talents, integration to mainstream society without stigma, LIK is fulfilling several of their social needs.
As Medicine is becoming patient centric, LIK can act as a role model for our nation in Lupus advocacy. India needs more initiatives, like LIK, across the nation to empower our lupus patients."
Professor and Head, Dept of Clinical Immunology & Rheumatology, Kalinga Institute of Medical Sciences, Bhubaneswar Past President, Indian Rheumatology Association
“Lupus Initiative Kolkata is a patient-centric organisation for Lupus patients. I am not aware of any other group in India that looks after patients with Lupus in such a personal way, right from ensuring the diagnostic investigations and enabling access to subsidized medicines for patients. This may be an inspiration for similar groups in other parts of our country in the future.”
Senior Consultant, Sir Ganga Ram General Hospital. Past President, Indian Rheumatology Association (IRA). Past Vice President, Asia-Pacific League of Associations for Rheumatology (APLAR). President’s Honorary Physician.
“I am yet to see a greater initiative in our country than LIK when it comes to offering Lupus patients access to proper healthcare. Patients need an interface when it comes to affordability issues in medicine. Both doctors and patients can learn more about the gaps in management through a group like this.”
Professor and Head, Dept of Clinical Immunology & Rheumatology, Sanjay Gandhi Post-Graduate Institute, Lucknow. Past President, Indian Rheumatology Association (IRA). Editor, Indian Journal of Rheumatology.
“Lupus is a disease where you need both the physician and the society to take part in managing the disease. If you have Lupus, you need an excellent support system, mainly from other patients living with the condition. Others who have gone through similar experiences can guide patients in getting through the ups and downs of Lupus. LIK is an excellent support group in this regard.”
Professor and Head, Dept of Rheumatology, All India Institute of Medical Sciences, New Delhi.
“Lupus Initiative Kolkata has done a wonderful job of bringing together patients with Lupus and keeping this community well-informed about their condition. In the wake of the COVID pandemic, this support has been necessary for these patients. The regular activities organized by LIK enable increased awareness among both patients and doctors. This awareness is the need of the hour.”
Director, Centre for Rheumatology, Calicut. Editor, Indian Journal of Rheumatology.
“Lupus imposes a tremendous burden on the lives of both patients and their family members. LIK has been supporting them in their journey with this condition in every way possible, including affordable healthcare to patients and improving their understanding of issues like pregnancy in Lupus patients. This allows patients to go ahead with the proper treatment needed.”
Professor and Head, Dept of Clinical Immunology, JIPMER, Pondicherry.
“LIK is a unique initiative keeping Lupus patients at the centre of focus. Patients are able to share their concerns, and their family members are able to provide better support. Making diagnostic tests and medications affordable at subsidized rates is a wonderful step in our country to increase access to healthcare. LIK has transformed the lives of many patients in West Bengal, and I hope this model is adopted in other states as well.”
LIK perfectly understand the plight of the patients & their caregivers. This organisation under the leadership of Dr Alakendu Ghosh have published patient education booklet in English & regional vernacular to educate the patient regarding this disease. This organisation acts like a common platform for all Lupus activities including academic updates to caregivers and support all activities for the betterment of Lupus patients.
This society and all its members have been no less than my family and being able to come here and serve people is one of the greatest joys of my life. Thank you all once again and I hope that I continue being a part of LIK and be able to serve in the coming years too.