Perception about lupus – physician
and society
Ritasman Baisya
DM Resident , Rheumatology , NIMS

Introduction
• Systemic lupus erythematosus – a global health problem that
affects people of all nationalities, ethnicities , genders & ages
• As a wolf can bite the body , lupus can affect any part of the
body in any way at any time, often with unpredictable and
devastating effects
• While lupus knows no boundaries, knowing all we can about
lupus can help control its impact.

During my short journey in the realm of patient care …… My
perception on lupus as medical student …….

First encounter
• When I was in 12th standard , I came across the name of
the disease SLE for the first time in my biology textbook .
• A few words were written describing it predominantly as a
disease of the skin .
• I asked about it to my father who is a doctor and he replied
it is a rare disease

A little exposure in pathology …
• My second encounter with the name was during 2nd professional
MBBS, in the pathology book of Robbins.
• In the chapter on immunology and autoimmunity , I read about
the pathophysiology of lupus , and was fascinated to learn about
the interplay of immune cells in our body .
• Still i had no actual exposure to a patient whose body is the stage
of this abnormal interplay

First step in internal medicine …
• In final year, during posting in General Medicine wards, my seniors
taught me how to diagnose a patient with lupus .
• I found many young females in the ward, who were struggling with their
life , bitten and disfigured by the wolf that lupus is
• I felt disheartened and sad for them, to have been afflicted by such
severe disease so early in their lives .
• However, doctors are expected to be strong willed and maintain a
facade of neutrality in front of patients– that was a challenge for me
then and infact still is …

The real story begins…..
• The period of internship was the time of true contact with
patients as we had to draw blood ,insert iv cannulas and
give treatment to them .
• When a patient with myocarditis was gasping at night , I felt
utterly helpless ,but I also noticed the dedication of my
seniors to save a precious life .
• Even when all of us were in a dilemma regarding whether the
fever of a patient is disease flare or infection , I found the
patient and her family looking up towards our sir with a hope
in their eyes

The short journey of my residency ..
• I have found many patients with varied presentations of Lupus
throughout my MD period and till now ..
• I now understand what our sir meant when he told if you
know SLE , you will know the whole of medicine ....
• An enthusiastic physician might enjoy the challenge of treating
an interesting and difficult SLE case , but for the patient ,it
means a lifetime of uncertainty and anticipation of the next
time her body turns against her ...

My journey ...
 Almost all of my patients complain of pain whether they say byatha or
noppi .
 I have found depression , cognitive drift and thought alteration in them,
from subtle mood changes to severe active disease
 I have to face patients who suddenly deteriorate without a known
immediate cause .
 I have seen how the disease affects the family, how varied their
responses to the situation can be severe depression , reluctance, denial
or simply ignorance .

Recently I met a 12 year old child in
acute medical care ,who even while
struggling with death and pain everyday ,
managed to write in a diary – Oh God
save me , these doctors are very good
……..

Perception of society about
lupus – my understanding …..

Public awareness- patient and family
• Public awareness is still very low , even the patients are
unaware about enormity of actual disease
• A large number patients feel that it is a mere skin disease or
involves joints only
• If a young woman looks well , more often than not it is
dismissed as a minor health issue .
• The response of family and friends is varied – ranging from
reluctance , depression and amounting to frank stigma, even
more so among middle class .

• Doctors have a major role as teachers in
educating the masses regarding
spectrum of disease and bringing about
clarity …..
DOCTORS ARE TEACHERS

Government and health agencies
• Our government and health agencies have until now been
extremely indifferent , turning a blind eye towards lupus and
the stigma surrounding it in society .
• Government should provide benefits to the patients – tax
exemption , protection against workplace discrimination ,
providing vocational opportunities
• Financial support is one basic and necessary step which
government should take

Research aspect ….
• There should be more research on the molecular aspects of disease
and outcome
• New drugs should be discovered and manufactured here in our
country .
• Only a committed partnership of the authorities with the clinicians ,
with proper investment and mutual dialogue can help build a
foundation and proper infrastructure for this .
• More medical personnel should be trained in the intricacies and
management of patients .

Ray of hope ……
• Celebrities like Selena Gomez have come out in the
open regarding their illness and expressed their
feelings toward disease
• World lupus day celebration is generating interest
among society
• Organised campaigns, Lupus chat and awareness
programme in social media are also a welcome
change ……

Indian doctors have always been pioneers in World of
Medicine and it is their duty to come forward and
take initiative to teach not only Indian population ,but
also whole world so that misconceptions regarding
disease are cleared to bring in a more scientific
understanding .
To conclude …..

My perception in poetic form ...
The wolf within ……
My body is now my own enemy
My blood has become foreign to me
Wolf bite on the skin makes me cry
Living cells are now about to die ……
My psyche is going the wrong way
My flesh becoming its delicious prey
With terrific pain and struggling breath
I now face the doom of death
As the wolf drags me to the verge of the end
My hand is held by white apron friend
New ray of hope arises within
Helping me fight the wolf within ……

THANK YOU ….