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
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?
Do your gums bleed often, for example, when you brush your teeth or after you’ve been to the dentist?
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.
Åsa has von Willebrands disease in a mild form, and was diagnosed when expecting her first child. She mainly suffers from heavy periods and wants to make girls and women aware of that it can be a sign of a bleeding disorder. Three out of four of Åsa’s children also have von Willebrand disease in a mild form.
Amanda is 21 years old and was diagnosed with ITP when she was 3. When it was at its worst, she was bleeding up to 25 days a month during her period and needed to double up on sanitary protection to manage heavy flow. Amanda would like to increase the awareness of bleeding disorders among girls/women and encourage those who suffer from bleeding symptoms to seek help.
Anna has von Willebrand disease in a moderate/severe form. Her bleeding symptoms began when she was one year old. As a child she had frequent nosebleeds, bruised easily and vomited blood during tonsillitis infections. It took several years before her symptoms were taken seriously and she received a diagnosis, because of the assumption that girls could not have bleeding disorders.
Ida is 30 years old and has ITP, an autoimmune disease that destroys the platelets in her blood and make her bleed easily. Ida received her diagnosis three years ago and suffers from bruises and so heavy periods that she bleeds through everything without her medicine.
Lilian was diagnosed with a mild form of von Willebrand disease when she was 25 years old. She knows how important it is to receive a proper diagnosis and treatment. Her first 25 years was unbelievably tough with extensive nosebleeds and heavy periods. She still has bleeding problems but now know what help there is to get.
Elisabet has worked as a school nurse for 25 years in Sweden and have met many girls with severe bleeding problems. Listen to her experience and learn more.
Emma was 29 years old when she was diagnosed with von Willebrand’s disease, type 1. As a child and during her teens she had a lot of symtoms that could be a sign of a bleeding disorder. But the healtcare told her it was normal and that she was unlucky. It was not until her daughter vomited blood during a throat infection as they both were diagnosed.
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