Sexuality and sickle cell disease

For decades, sickle cell disease (SCD) was mainly considered a childhood disease, since until 1973 life expectancy was 14 years⁽¹⁾. However, most children with SCD outlive this barrier⁽²⁾. Newborn screening, prophylactic penicillin, and effective vaccinations against Haemophilus influenzae type b and Streptococcus pneumonia are some of the factors responsible for this marked decrease in mortality^(3-5). Other contributory factors may include chronic transfusion to prevent stroke and the use of hydroxyurea^(6,7).

However, data from the National Association for Sickle Cell Disease in the USA show that 70% of SCD patients are either partially or totally dependent on financial support⁽⁸⁾. Adolescents may be challenged by issues related to body image due to delayed growth and late sexual maturation^(9-12), and many adults have difficulty sustaining marital relationships^(8,13).

The above motifs could explain, but not justify, the fact that sexuality is not a common subject in SCD. There are few reports about this theme in SCD, many of them associated with priapism events^(14-16). All these facts reinforce the importance of the paper from Côbo et al. published in this issue⁽¹⁷⁾.

Information is a key factor in reported sexual adjustment and satisfaction⁽⁸⁾. Côbo et al.⁽¹⁷⁾ observed that individuals with SCD presented a limited knowledge of sexual facts, which may adversely contribute to sexual adjustment and to low self-esteem.

These patients need to become independent and responsible adults, with productive and sexually fulfilling lives. There is an urgent necessity of giving adequate and complete information to these individuals and, also, adopting procedures that allow individuals to feel they have some control over their treatment, so that they can improve their self-esteem and achieve a better sexual adjustment. These efforts will help SCD patients to normalize their experiences and increase their chances of having a normal life⁽⁸⁾.