UNDERSTANDING THE SEXUAL EXPERIENCES OF PEOPLE LIVING WITH SICKLE CELL DISEASE

Abstract

Background: Sickle cell disease (SCD) is a blood disorder that mostly affects people of African heritage. The most known symptom of SCD is a pain crisis. A pain crisis is when red blood cells sickle in the blood vessels and cause intense, often debilitating pain. Until the late 1990s, SCD was seen as a pediatric health condition as people were not expected to live beyond their childhood. However, due to the advancements in medicine, people living with sickle cell disease (PLWSCD), in economically advanced countries, are living longer into adulthood. Thus, attention has shifted to investigate how SCD affects a person’s sexual health. Methods: 18 PLWSCD, in the United States of America and Canada, participated in in-depth recorded interviews. Using thematic analysis, the interviews were coded, and themes were created. Results: In Manuscript 1, four themes were produced: 1) Pain and Pleasure or Pleasure and Pain; 2) It Happens: Pain in Genitals; 3) Conversations with Partners; and 4) Please Talk to Us. For Manuscript 2, three themes were generated: 1) Let’s Reposition: Navigating Mobility; 2) Not Right Now; and 3) What Will They Think About Me. Conclusion: Overall, PLWSCD experienced a sex-or orgasm induced pain crisis, but little attention is given to this phenomenon by healthcare providers or within the sickle cell community at large. Furthermore, to their displeasure, PLWSCD lamented that sexual partners often questioned their ability to decide if they were fit enough to engage in sexual activities. Finally, due to complications from SCD, many participants have undergone surgeries for joint replacements. However, after undergoing joint replacement surgery, their ability to navigate sexual positions was stymied. Therefore, the Sickle Cell Disease and Sexuality Framework was created to help clinicians and PLWSCD understand how SCD affects a person’s sexual life.