Hemophilia is a rare bleeding disorder caused by a genetic defect on chromosome X. It is inherited as an X-linked trait, and hence, it is more frequently diagnosed in males, whereas women have been traditionally considered only as carriers of the disease. However, the role of women in families of patients with hemophilia is pivotal. As mothers, sisters, daughters, and female partners of patients with hemophilia, they play a central role in the management of the patient, considering healthcare, social, and familial aspects, but they might be affected by the disease as well, particularly in regions where consanguinity is frequent. This paper aims to explore the involvement of women in hemophilia, including their carrier status, bleeding symptoms, treatment challenges, and psychosocial impact not only related to male patients, but also as patients affected with hemophilia themselves. We advocate health equity, equal access to healthcare for men and women with hemophilia and dedicated resources to improve the unique needs of the women dealing with hemophilia, ultimately leading to improved care and quality of life.

Gender equity in hemophilia: need for healthcare, familial, and societal advocacy / R. Gualtierotti, I. Garagiola, M. Mortarino, S. Spena, O. Romero-Lux, F. Peyvandi. - In: FRONTIERS IN MEDICINE. - ISSN 2296-858X. - 11:(2024), pp. 1345496.1-1345496.9. [10.3389/fmed.2024.1345496]

Gender equity in hemophilia: need for healthcare, familial, and societal advocacy

R. Gualtierotti
Primo
;
I. Garagiola
Secondo
;
M. Mortarino;S. Spena;F. Peyvandi
Ultimo
2024

Abstract

Hemophilia is a rare bleeding disorder caused by a genetic defect on chromosome X. It is inherited as an X-linked trait, and hence, it is more frequently diagnosed in males, whereas women have been traditionally considered only as carriers of the disease. However, the role of women in families of patients with hemophilia is pivotal. As mothers, sisters, daughters, and female partners of patients with hemophilia, they play a central role in the management of the patient, considering healthcare, social, and familial aspects, but they might be affected by the disease as well, particularly in regions where consanguinity is frequent. This paper aims to explore the involvement of women in hemophilia, including their carrier status, bleeding symptoms, treatment challenges, and psychosocial impact not only related to male patients, but also as patients affected with hemophilia themselves. We advocate health equity, equal access to healthcare for men and women with hemophilia and dedicated resources to improve the unique needs of the women dealing with hemophilia, ultimately leading to improved care and quality of life.
bleeding symptoms; carrier; gender-specific research; hemophilia; psychosocial impact; quality of life; treatment challenges; women
Settore MED/09 - Medicina Interna
Settore MED/15 - Malattie del Sangue
2024
Article (author)
File in questo prodotto:
File Dimensione Formato  
fmed-11-1345496.pdf

accesso aperto

Descrizione: Mini Review
Tipologia: Publisher's version/PDF
Dimensione 374.19 kB
Formato Adobe PDF
374.19 kB Adobe PDF Visualizza/Apri
Pubblicazioni consigliate

I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.

Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/2434/1048174
Citazioni
  • ???jsp.display-item.citation.pmc??? 0
  • Scopus 0
  • ???jsp.display-item.citation.isi??? 0
social impact