Contenu connexe

Similaire à talking lupus.pptx(20)


talking lupus.pptx

  1. Perception about lupus – physician and society Ritasman Baisya DM Resident , Rheumatology , NIMS
  2. 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.
  3. During my short journey in the realm of patient care …… My perception on lupus as medical student …….
  4. 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
  5. 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
  6. 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 …
  7. 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
  8. 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 ...
  9. 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 .
  10. 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 ……..
  11. Perception of society about lupus – my understanding …..
  12. 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 .
  13. • Doctors have a major role as teachers in educating the masses regarding spectrum of disease and bringing about clarity ….. DOCTORS ARE TEACHERS
  14. 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
  15. 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 .
  16. 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 ……
  17. 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 …..
  18. 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 ……
  19. THANK YOU ….