Shellye Horowitz, a patient with hemophilia and advocate, discusses the impact of hemophilia on women and girls.
Hemophilia
Hemophilia is a bleeding disorder that slows the blood clotting process. People with this disorder experience prolonged bleeding following an injury or surgery. In severe cases, heavy bleeding occurs after minor trauma or in the absence of injury.
Historically, hemophilia was thought to be a “male” disease. This belief has caused prolonged effects on women and girls with the disorder. Significant delays in diagnosis and misdiagnosis are common and cause great impact on physical and mental health. Undiagnosed hemophilia can lead to heavy menstrual bleeding, prolonged bleeding following surgery, anemia, easy bruising, joint damage, and severe discomfort.
A recent article published in The Journal of Haemophilia predicted that there are over 1 million women with hemophilia in the world. However, it is likely that the majority of these patients are not receiving proper care. Shellye’s diagnostic journey is proof of this unmet need in the hemophilia community. Although she exhibited signs of hemophilia from an early age and had a family history of the disease, a proper diagnosis was not given until her 40s. Because of this, she is now an advocate for hemophilia awareness and improvement to care, especially for girls and women.
Hemophilia Survey and Video Series
To better understand the impact of hemophilia on women and girls, the Hemophilia Life Stages and Changes Global Survey was conducted. This survey assessed how hemophilia affects women’s lives in areas including challenges with family planning, physical activity, and mental health. Key findings included that 59% of women were over the age of 25 when they first received their diagnosis. Further, 65% of women stated they experienced a negative impact on their ability to start a family and over 70% said travel and level of physical activity were negatively impacted. The impact of mental health was also significant, with 30% being diagnosed with anxiety and 23% with depression.
In addition to this survey, the Hemophilia Through My Eyes Video Series sheds light on patient stories, including Shellye’s, by giving a personal look at the realities of living with this disease.
To learn more about hemophilia and other rare hematologic conditions, visit https://checkrare.com/diseases/hematologic-disorders/