Many girls suffer from bleeding disorders in silence. Do you?

GIRLS ALSO HAVE BLEEDING DISORDERS

Did you know that approximately 50,000 girls in Sweden have a bleeding disorder, but only about a thousand have received a diagnosis? Many of them are living with a bleeding disorder without even realizing it. Bleeding disorders can sometimes be hard to detect because the symptoms, for example heavy periods, are not always recognized as anything unusual. Even a mild bleeding disorder may cause heavy bleeding during surgery or childbirth. It is therefore important for people suspected of having a bleeding disorder to be assessed.

The Swedish Hemophilia Society is a non-profit organization for people with hemophilia, von Willebrand disease, ITP and other rare bleeding disorders. We have gathered facts about girls and bleeding disorders for you to learn more. Take our quiz, listen to personal stories and help us spread the word so that more girls are investigated and receive a proper diagnosis and treatment.

Are you bleedy?

  • Take our quiz and see if you bleed easily.

  • Start quiz
  • Does your period last for more than 7 days?

  • Yes
  • No
  • Are your periods so heavy that they have a significant impact on your quality of life, for example, that you feel limited in your daily activities during your period?

  • Yes
  • No
  • Do you bruise easily?

  • Yes
  • No
  • Do you have frequent nosebleeds?

  • Yes
  • No
  • Do your gums bleed often, for example, when you brush your teeth or after you’ve been to the dentist?

  • Yes
  • No
  • Have you had abnormally heavy bleeding during surgery, childbirth or miscarriage?

  • Yes
  • No
  • Do you have a relative who ”bleeds easily”?

  • Yes
  • No
  • Are you often pale and tired or have an iron deficiency?

  • Yes
  • No

WHERE´S MARY?

In this booklet we have assembled facts for those who want to know more or work in primary care. Mary, the fictional main character, is based on stories from girls with bleeding disorders. What counts as a heavy period? What other symptoms are signs of a bleeding disorder? Where do you go for help?

BLOOD LOSS ASSESMENT CHART

Do you suffer from heavy and prolonged periods? The Blood Loss Assessment Chart is a tool to assess the level of menstrual bleeding by entering the number of tampons and sanitary towels used during a period. This provides a measurement to determine whether your menstruation can be considered heavy.

Personal stories

Bleeding facts and FAQ

What is a bleeding disorder and how do you get it?

Bleeding disorders are the collective name for a number of chronic disorders that limit the body’s ability to coagulate blood. Many bleeding disorders occur in women as well as men and most are congenital (which means you inherit them from one parent or sometimes both). Most bleeding disorders have different degrees of severity, for example Hemophilia A and B, von Willebrand disease and Platelet function disorders. In some cases, they can occur through genetic mutations without previously being present in the family.

What symptoms can be a sign of a bleeding disorder?

Symptoms suggesting a bleeding disorder:

  • Frequent nosebleeds
  • Heavy menstrual periods
  • Bruise easily
  • Bleeding from the gums
  • Iron deficiency and/or anemia
  • Abnormally heavy bleeding during surgery, childbirth or miscarriage
  • Relatives who ”bleeds easily”

Note! You don’t have to have all the symptoms. In women with a mild bleeding disorder, heavy periods may be the only symptom.

Which bleeding disorder can women get?

The most common bleeding disorders that affect women are von Willebrand disease and Platelet function disorders. Both have similar symptoms, where bleeding from mucous membranes and bruises are common. Women with bleeding disorders tend to have more symptoms than men due to monthly periods and going through childbirth.

von Willebrand disease (vWD) affects women and men equally. It is caused by a defect or deficiency of a protein in the blood called the ”von Willebrand factor” that is necessary for normal coagulation. VWD is characterized as mild, moderate and severe. The mild form is the most common and comprises around 75 % of all cases. Common symptoms include heavy and prolonged menstrual periods (menorrhagia), nosebleeds, bleeding from the oral mucosa and bruises. In cases of moderate and severe vWD, spontaneous bleeding in the joints and muscles, as well as bleeding in the stomach and intestines can occur.

Platelet function disorders also affect women and men in equal numbers and may be as common as vWD. Because the bleeding symptoms can be mild, many women never go through an investigation and receive a diagnosis.

ITP (Idiopathic thrombocytopenic purpura) is a bleeding disorder in which the immune system attacks the platelets, causing them to drop to such low levels that bleeding occurs. ITP is not hereditary. Common symptoms include easy or excessive bruising and bleeding, for example heavy periods. It affects children and adults. Children usually recover fully but in adults the disorder is often long term. Chronic ITP affects women more often than men.

Hemophilia mainly affects men but women can have it as well. Women may carry the trait for hemophilia A and B, which can sometimes result in bleeding symptoms.

Note! Even a mild bleeding disorder may cause heavy bleeding during surgery, accident or childbirth. It is therefore important for people suspected of having a bleeding disorder to be assessed.

Read more at fbis.se

What counts as a heavy period?

When a person bleeds more than 80 ml per menstrual period it is considered to be heavy – a measurement that can be difficult to assess. Comparing yourself to other family members can be misleading, because they might also have an undiagnosed bleeding disorder.

The
Blood Loss Assessment Chart is a tool to assess the level of menstrual bleeding by entering the number of tampons and sanitary towels used during a period. This provides a measurement to determine whether the menstruation can be considered heavy.

Heavy period? (Checklist)
If one or more of the following points applies to you, it may be a sign of a bleeding disorder. Contact a Healthcare Center and request an investigation!

  • Do you often bleed through your sanitary protection?
  • Do you need to double up on sanitary protection?
  • Do you have to change your sanitary protection more than every other hour?
  • Do you feel limited in your daily activities during your period?
  • Does your period last for more than 7 days? (the flow may vary)
  • Does your period have a significant impact on your quality of life?
  • Does your period cause iron deficiency and/or anemia?

Who should you talk to if you suffer from heavy periods or other bleeding symptoms?

First you should visit a healthcare center or a gynecologist where the doctor can ask additional questions and take some blood samples. You can also talk to your school nurse. If a bleeding disorder is suspected, the doctor will write a referral for further investigation at a Hemophilia Treatment Center. They have the resources required to take care of people with different bleeding disorders. If the doctor suspects ITP, a referral will be written to a Hematology Treatment Center.

If you are pregnant or have had a miscarriage with heavy bleeding, contact a Maternity Care Specialist directly.

What happens at a Hemophilia Treatment center?

A doctor will carry out a thorough assessment of your medical history and ask questions, for example about bleeding symptoms, dental extractions and bruises. By taking several blood samples, the type of bleeding disorder and degree of severity can be established. Von Willebrand disease is hard to diagnose because levels of the von Willebrand factor can be affected by birth control pills, breastfeeding, pregnancy or infections.

What treatment is available?

In mild cases of bleeding disorders, treatment when bleeding is often enough, which means you take the medicine when bleeding episodes occur. For more severe bleeding disorders, prophylactic treatment is required, which means injections of factor concentrate. Women with mild bleeding disorders may also require prophylactic treatment before an operation or after giving birth.

Women of childbearing age can take contraceptive pills to reduce the amount of menstrual bleeding. Another option is hormonal intrauterine device (IUD).

For more information about girls and bleeding disorders, please download the booklet Where’s Mary and visit our website fbis.se

Contact

Anna Tollwé

Member at the Women’s committee
The Swedish Hemophilia Society
anna@tollwe.se

Do you have a question?

  • This field is for validation purposes and should be left unchanged.

Contact

Anna Tollwé

Member at the Women’s committee
The Swedish Hemophilia Society
anna@tollwe.se

Do you have a question?

  • This field is for validation purposes and should be left unchanged.