Women and Bleeding Disorders: Building Awareness

Girls & Women with Bleeding Disorders

Today, I want to write a post on bleeding disorders and hope. I am sure every single one of you reading this post has a story to tell.

Blood disorders do not discriminate on the basis of gender. Women are just as likely as men to bleed. But the effects may not be equal. One thing with hemophilia, and it relates to other bleeding disorders, is the perception that women don’t have bleeding disorders. Hemophilia is an x-linked disorder, so men are more severely affected, but women can also be affected with hemophilia, and they can have other bleeding disorders.

Women with bleeding disorders face added challenges, including serious impacts to their reproductive health and delayed or failed diagnosis.

“Each time a woman stands up for herself, without knowing it possibly, without claiming it, she stands up for all women”

A carrier is a female who has the genetic mutation for hemophilia on one of her X chromosomes. Carriers with clotting factors levels of less than 50% of normal may have symptoms similar to a male with mild hemophilia. Von Willebrand Disease (vWD), the most common inherited bleeding disorder. Women can also have other rare blood disorders like factor deficiencies I, II, V, VII, X, XI, XII, XIII and types of platelet disorders.

Bleeding disorders among females may cause special challenges because of the bleeding associated with menstruation and childbirth. Menorrhagia is abnormally heavy and prolonged menstrual period and is the most common symptom among females with a bleeding disorder.

Treatment is available for females with bleeding disorders.

There are two types of doctors that often treat women:

· Hematologist: a physician who specializes in the diagnosis and treatment of blood disorders.

· Gynecologist: a physician who specializes in the diagnosis and treatment of disorders affecting the female reproductive system.

Depending upon the type and severity of the disorder and the life-stage of the patient, either or both kinds of doctors may be involved in treating a female with a bleeding disorder. Although men and women with bleeding disorders have similar symptoms, such as bleeds into joints and tissues, women can experience added complications during menstruation, pregnancy, labor and delivery. Some doctors are not familiar with bleeding disorders in women, many of whom are undiagnosed or misdiagnosed. Women with undiagnosed and untreated bleeding disorders risk serious complications.

Effects of bleeding disorders on women and adolescent girls include:

  • Physical issues — headaches, lethargy, anemia
  • Increased incidence of surgical treatment — hysterectomy, uterine ablation
  • Emotional and social issues — low self-esteem, anger, fear, isolation, anxiety, depression
  • Absenteeism from school, often leading to academic and social struggles
  • Difficulty obtaining and maintaining employment, often due to missed work days
  • Financial issues arising from employment issues and/or costly medical interventions

Empowering women

Women empowerment, much more Gender Equality, remains a challenge. Hemophilia Federation of India (HFI) was the first NMO to form a structured Women’s Group in 2013; who gave them a platform, so their voice could be heard and also they can make a name with dignity around the world. Taking care of someone with a bleeding disorder takes special knowledge, skills and strength.

Women’s Group of HFI

This approach can be implemented by involving more and more women in our hemophilia community. It can be done by providing different ways so that bleeding disorder for both boys or girls are understood easily. For that, it is very necessary to participate in the survey which is launched to identify the female sufferers.

“ A Woman With A Voice is by definition A Strong Woman

It’s a fact that males are the most known sufferers but “Women can be the bleeders too.” And due to this lack of awareness, the science and implementation of programs lags far behind their male counterparts. Girls and women with bleeding problems should also be part of the worldwide community and their problems should be included in the equation. The hemophilia community must bridge the gap and foster equal opportunities for training of girls and women in all aspects of leadership development in order to bring more girls and women into leadership roles. This begins at the local levels, up to the national and on to the international level.

As a woman with a rare bleeding disorder, I have volunteered to facilitate women’s group meetings in my hemophilia chapter to learn leadership skills. Also, last year (2016) I have volunteered at Women’s Booth at World Congress at Orlando. These meetings have given me opportunities to hear different problems and learn about the issues of women. Identification of more women and girls with bleeding disorders is utmost important. Resources for Medical Research learning more about girls and women with bleeding disorders should be provided. And for all these funds are required, so the funded project for women leaders should be allotted.

There are a few imperatives in order to improve hemophilia care and treatment especially for girls and women with bleeding disorders. One is to have an adequate treatment infrastructure which includes professionals who are capable and properly trained.

Second is — the sharing of information. We need to come up with updated materials with the view of educating patients and families in order to minimize suffering due to injuries or preventable bleeds. Awareness and education programs regarding women bleeders should also be conducted.

Thirdly, it is necessary to explore further how many girls and women with bleeding disorders there are in our community. According to the World Health Organization, India registers the highest number of maternal deaths in the world and post-partum hemorrhage is the no. 1 cause of such deaths.

(Reference: http://indianexpress.com/article/india/india-others/india-has-highest-number-of-maternal-deaths/)

Participating in World Hemophilia Day (17th April) is an opportunity to ensure that the voice of young women and girls is heard and that a commitment is made to empower them to participate in change. Organizations within the blood disorder community are making important strides in addressing women and bleeding disorders. But progress must be accelerated to ensure women know when and how to seek proper treatment. Women must first empower themselves with the facts about blood disorders. With millions of women impacted by blood disorders, it is absolutely essential that women and healthcare providers arm themselves with the knowledge and resources to address the problem — for their own benefit and for the benefit of future generations.

“Nothing Will Work; Unless You Do”

Hope this can make OUR (female bleeders) voice louder and we can have proper facilities in terms of medical facilities and other aspects also. Girls and young women must be part of decisions on the implementation of the new Global Goals for Sustainable Development. Our voices and unique contributions are crucial if real progress is to be made in the lives of girls and young women around the world. We must be agents of change.

“Women Can Bleed Too”