The management of hemophilia is challenging both in terms of medical care and in its broad im-pact on many aspects of an individual’s life, including self-perception.
Sexuality, however, is still left in the background: both for modesty and culture, it is often inhibited by taboos and prejudice – which can be considered an obstacle to better information – arising from the disease and the way it can affect the couple and personal and social life.
It is known that complications of hemophilia can be accompanied by sexual dysfunction, including lack of libido or impotence, pain or fear of pain, which can affect desire, while arthropathy can pose limits during intercourse. For this reason, patients should receive psychological and social support during the various stages of life.
According to a questionnaire conducted on 210 patients with hemophilia from 26 countries, the percentage of patients whose sexuality is influenced, at least in part, by the disease appears to be predominant.
The survey showed that, despite the high percentage of patients with hemophilia who stated the need to talk freely about their sexuality, few of them actually had the opportunity to have a discussion with their hematologist.
Further research on this topic, where there is still insufficient scientific data, will allow experts to better focus on issues such as what kind of support to offer patients and who should provide it, how to identify the needs of individuals while overcoming embarrassment, whether and what other medications (analgesics, anti-inflammatory drugs, etc.) are taken by patients to improve their sex lives.
Assessment of sexuality information needs in haemophilia: Evaluation of a multi-ethnic patient cohort, Gianluca Sottilotta, Dora Messina, Andrea Buzzi, DOI: 10.1111/hae.14121