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Overcoming Stigma in Sickle Cell Disease


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Presentation on the main myths of sickle cell patients and data against these claims. Also covers the basics of SCD

Published in: Health & Medicine

Overcoming Stigma in Sickle Cell Disease

  1. 1. Overcoming Stigma in Sickle Cell Disease Presented by: Tosin Ola-Weissmann, BSN, RN
  2. 2. What is Sickle Cell? <ul><li>What is sickle cell? </li></ul><ul><ul><li>Hereditary </li></ul></ul><ul><ul><li>Evolutionary response to malaria </li></ul></ul><ul><li>Population sickle cell affects </li></ul><ul><ul><li>Millions worldwide </li></ul></ul><ul><ul><li>Globalization </li></ul></ul><ul><li>Lifespan </li></ul><ul><li>Nature of SC </li></ul>
  3. 3. What Does Having SC Feel Like? <ul><li>Anemia: Fatigue, exhaustion, low energy </li></ul><ul><li>Excruciating Pain </li></ul><ul><ul><li>Side effects </li></ul></ul><ul><li>Insomnia </li></ul><ul><li>Depression </li></ul><ul><li>Jaundice </li></ul><ul><li>On top of this, we deal with negative perceptions and ignorance of sickle cell in our homes, hospitals and communities </li></ul><ul><li>People with SC trait can exhibit these symptoms but to a milder intensity </li></ul>
  4. 4. Triggers of a SC Pain/Crisis <ul><li>Dehydration </li></ul><ul><li>Stress </li></ul><ul><li>Infection </li></ul><ul><li>Temperature changes </li></ul><ul><ul><li>Swimming </li></ul></ul><ul><ul><li>Weather change </li></ul></ul><ul><li>Pressure changes </li></ul><ul><ul><li>Snow sports </li></ul></ul><ul><ul><li>Flying </li></ul></ul><ul><li>Periods </li></ul><ul><li>Sex </li></ul><ul><li>Rigorous physical activity </li></ul>
  5. 5. Sports & Sickle Cell <ul><li>Overexertion requires higher metabolic and oxygen demand </li></ul><ul><li>Overcompensation by heart and lungs </li></ul><ul><li>Heart attack or respiratory failure </li></ul><ul><li>Avoid this trigger </li></ul><ul><ul><li>Pace yourself </li></ul></ul><ul><ul><li>Pain is a warning signal </li></ul></ul><ul><ul><li>Hydrate </li></ul></ul><ul><ul><li>Take breaks as needed </li></ul></ul>
  6. 6. Basic Treatment Principles <ul><li>Hydration </li></ul><ul><li>Oxygenation </li></ul><ul><li>Pain Management </li></ul><ul><li>Blood Transfusions </li></ul><ul><li>Bone Marrow Transplant </li></ul><ul><li>Hydroxyurea </li></ul><ul><li>Herbal remedies </li></ul><ul><li>Nutraceuticals </li></ul><ul><li>Dietary </li></ul><ul><li>Lifestyle </li></ul>
  7. 7. SC Voices <ul><li>Sickle cell pain is indescribable. I remember when I was in labor, I didn’t make a sound. My mother had to ask, &quot;Why are you so quiet, doesn't it hurt?&quot; </li></ul><ul><li>I responded, &quot;Mom, I have sickle cell, this is nothing...&quot; ~Belinda Sylvestre </li></ul>
  8. 8. Why do you think SC patients encounter so much ignorance, stereotyping and negative attitudes in our schools, communities and the healthcare setting?
  9. 9. Myth #1: SC Patients are Drug Addicts, Drug-Seeking, and Not Really in Pain <ul><li>Chronic pain </li></ul><ul><li>Under-dosing/Tolerance </li></ul><ul><li>Delay in administration of analgesics </li></ul><ul><li>Pseudo-addiction </li></ul><ul><li>‘ 3 shot rule’ and Quick discharges lead to patients returning to the ED within 3 days from discharge STILL IN PAIN! </li></ul><ul><li>Reference: Solomon, LR. Treatment and prevention of pain due to vaso-occlusive crises in adults with sickle cell disease: an educational void. Blood. 2008; 111:997-1003 </li></ul>
  10. 10. <ul><li>In a US survey, emergency department physicians significantly overestimated the prevalence of substance abuse, although research supports that less than 10% of patients with sickle cell disease meet the clinical criteria for dependence on or abuse of opioid analgesics </li></ul><ul><li>Reference: Elander J, Lusher J, Bevan D, Telfer P. Pain management and symptoms of substance dependence among patients with sickle cell disease. Soc Sci Med, 2003;57:1683-1696 </li></ul>
  11. 11. Myth #2: SC Patients Over-use the ED <ul><li>Do CHF/COPD patients over-use the ED? What about diabetics? </li></ul><ul><li>Patients with SCD with high utilization rates may actually have more severe anemia, more painful episodes, greater pain and distress ratings, and worse quality of life compared to those with lower utilization rates. </li></ul><ul><li>Reference: Aisiku, I. P., Smith, W. R., & McKlish, D. K. (2009). Comparisons of high versus low emergency department utilizers in sickle cell disease. Annals of Emergency Medicine , 53 , 587-593. </li></ul>
  12. 12. SC Voices <ul><li>I detest going to the emergency room or getting admitted to the hospital for my disease. I will manage it at home as much as I can, but if I need to go to the hospital, it is because the pain is uncontrollable, and nothing in my arsenal works. I do go to my doctor’s visits, and have a healthy grasp of my disease process, but I still have to go to the emergency room when in an acute pain crisis. Most of the time, even if I go to my doctor’s office, it is just a waste of time, because he will tell me to go to the ED. </li></ul>
  13. 13. Myth #3: SC Patients are Difficult <ul><li>Traumatized, embittered </li></ul><ul><li>Tremendous pain </li></ul><ul><li>Much more sensitive to delay and negative attitudes by personnel </li></ul><ul><li>The proactive ‘drug seeking’ behavior is as a result of previous negative experiences in the hospital setting. If sickle cell patients tend to be seen as cranky, aggressive, demanding, or with a chip on their shoulder; consider that it could well be a reaction to the treatment that they have received in the past, and understand the connection between your attitudes and the response of the patients. </li></ul>
  14. 14. SC Voices <ul><li>I've been in the ER 8 times last year and admitted 4 times. All times there have been at least one nurse that comes in and treats me like an addict or like I completely don't know how much medicine my body can sustain. I usually end up not getting enough medicine to take the edge off the crisis pain, and in the long run, my crisis lasts longer because of (not to be rude) ignorant nurses who don't know the first thing about a sickle cell pain crisis. ~Simone </li></ul>
  15. 15. SC Voices <ul><li>I abhor the term &quot;frequent flyer.&quot; The ER staff at the hospitals in the DC area use that term to identify someone who has had to return to the ER often. Also, it's always assumed that you are there to seek drugs instead of medical care. I'm ...often told I'm not like the average SC patient because when I come in I'm &quot;genuinely&quot; sick. That really bothers me that we are judged so harshly because our treatment includes narcotics. They really don't understand and make me feel as if they don't care either. ~ Kena </li></ul>
  16. 16. Things You Shouldn’t Say to your Sickle Cell Patient… <ul><li>So how long have you had sickle cell? </li></ul><ul><li>You don’t look/act/talk like most sicklers </li></ul><ul><li>Your lab work says you are ready to be discharged… </li></ul><ul><li>Pain </li></ul><ul><ul><li>How can you still be in pain? </li></ul></ul><ul><ul><li>You can’t be in pain and ____ (talking, eating, sleeping, watching TV, on the computer) </li></ul></ul><ul><ul><li>You should be used to this pain by now </li></ul></ul>
  17. 17. Assess Patient For <ul><li>Anemia </li></ul><ul><li>Pain </li></ul><ul><li>Infections </li></ul><ul><li>Constipation </li></ul><ul><li>Insomnia </li></ul><ul><li>Jaundice </li></ul><ul><li>Respiratory distress </li></ul><ul><ul><li>Acute chest syndrome </li></ul></ul><ul><li>Renal and liver function </li></ul><ul><li>Depression </li></ul>
  18. 18. Complications of SCD <ul><li>Strokes </li></ul><ul><li>Gallstones </li></ul><ul><li>Splenic Sequestration </li></ul><ul><li>Avascular Necrosis </li></ul><ul><li>Iron Overload </li></ul><ul><li>Migraines </li></ul><ul><li>Leg ulcers </li></ul><ul><li>Priapism </li></ul><ul><li>Renal failure </li></ul><ul><li>Acute chest syndrome </li></ul><ul><li>Pulmonary hypertension </li></ul><ul><li>Retinal damage/blindness </li></ul><ul><li>Deafness </li></ul>
  19. 19. SC Patient as a Teacher <ul><li>Your patient knows more about their body and their sickle cell than you think. </li></ul><ul><li>Listen and learn </li></ul><ul><li>Collaborate with your patient on their plan of care </li></ul>Reference: Campbell, A. D., Ross, P. T., Kumagai, A. K., Christner, J. G., & Lypson, M. L. (2010). Coming of age with sickle cell disease and the role of patient as teacher. Journal of the National Medical Association , 102 , 1073-1078.
  20. 20. Conclusion <ul><li>For more information about the Sickle Cell Warriors, visit </li></ul><ul><li>Email me at </li></ul><ul><li>[email_address] </li></ul><ul><li>Connect with SC patients on Facebook/SickleCellWarriors </li></ul>