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Inherited bleeding disorders are usually associated with boys and men. But with medical advances, more and more women have been diagnosed with inherited bleeding disorders such as Hemophilia, von Willebrand Disease, Platelet Function Disorders and factor deficiency disorders. This presentation shares about bleeding disorders affecting women. The first part is a report from the WFH World Congress 2014 held in Melbourne by the presenter, My Girls Blood Ambassador from the Philippines, Andrea Echavez. The second part is about inherited bleeding disorders affecting women.
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Women and Inherited Bleeding Disorders
Presented by Andrea T. Echavez
Ambassador, My Girls Blood
HAPLOS General Assemby
Sept. 27, 2014
My Girls BoodSocial network of women
around the worldFounded in 2011 by
Cheryl D' Ambrosio431 members as of Sept.
27, 2014Members are composed of
women with inherited bleeding disorders, moms/ wives/sisters/caregiver of persons with bleeding disorders
Report from the World Congress
Melbourne 2014
Philippine Delegation with Cheryl D' Ambrosio
Poster Presentation
Summary: Diagnosing bleeding
disorders in the Philippines continue to be a challenge because of the diagnostic facilities
Involvement of diagnosed patients and their families in raising awareness about the disorder increase the probability of new patients getting diagnosed.
Blood Sisters
Inherited Bleeding Disorders Affecting Women Von Willebrand Disease Platelet function disorders Hemophilia A and B Other factor deficiencies
Von Willebrand Disease Type 1 VWD is the most common. About 75% of women with VWD have
Type 1. With this type, the VWF works normally, but there is less of it than normal. Type 1 is inherited through an autosomal dominant pattern. This means only one of the parents needs to be a carrier of the defective gene to pass it on to the child.
Type 2 VWD is the next most common. In Type 2 VWD, the VWF molecule may be present in normal quantity, but it does
not work properly. The VWF does not play its role in binding platelets to the wall of the blood vessel; sometimes it binds to platelets in the bloodstream instead of at the site of the broken vessel wall. Type 2 VWD is also an autosomal dominant defect, meaning only one parent needs to be a carrier to pass on the disorder.
Type 3 VWD is the rarest, and the most serious, form. It affects about 1 in 250,000 women. People with Type 3 VWD have very little VWF in their blood. As a result bleeding can happen often and, if untreated, can be serious.
Platelet Function Disorders Platelet function disorders may be as common as von Willebrand
disease. However, because many of these disorders are mild, many women go undiagnosed.
Some types of platelet function disorder, such as Glanzmann Thrombasthenia, can be life-threatening.
Depending on the type of platelet function disorder...
platelets do not stick to the walls of damaged blood vessels platelets do not clump together at the site of the injury to the
blood vessel platelets do not form a proper surface so that other blood factors
can make a fibrin clot.
Hemophilia A & B Hemophilia A (factor VIII deficiency) affects 1 in 5000 males.
Hemophilia B (factor IX deficiency) affects 1 in 25,000 males.
Severe hemophilia in women is extremely rare. However, women are carriers of hemophilia and many women who are carriers have bleeding problems.
Many carriers have a clotting level between 30% and 70% of normal and do not usually suffer from severe bleeding, although they may suffer from the most common symptom - heavy menstrual bleeding. However, some carriers have less than 30% of the normal level of factor VIII or IX. These women are considered to have mild hemophilia. It is not known how many carriers of hemophilia A and B have bleeding problems. Estimates vary up to 60%.
Other bleeding disorders
Signs & Symptoms of Bleeding Disorders in WomenHeavy menstrual periodsPassing clots that are bigger than a quarter."Low in iron" or severe anemia.Heavy bleeding after dental surgery, other surgery, or childbirth.Prolonged bleeding episodes such as might occur as a result of: Dental surgery, other surgery, or childbirth; Frequent nose bleeds (longer than 10 minutes); Bleeding from cuts or injury (longer than 5 minutes); or Easy bruising (weekly, raised, and larger than a quarter in
size).Have one or more of the bleeding symptoms above and someone
in your family has a bleeding disorder such as von Willebrand disease or a clotting factor deficiency such as hemophilia.
Menstruation: What is normal?Lasts about 4 or 5 days, but 2 and 7 days is
also considered normal.
Occurs on average about every 28 days, but 21 to 35 days between periods is still considered to be normal.
You should be able to use each pad for more than an hour, even on your heaviest days.
Menstruation: What is not normal?Lasts more than 7 days is considered heavy, and is called
menorrhagia. So much blood that it soaks through one or more pads
every hour for several hours in a row.Need to double up by wearing one pad because you are
bleeding so heavily.Need to change pads more than once during the night.Have a menstrual flow that repeatedly contains blood clots
the size of a quarter or larger.Have a menstrual flow so heavy that it keeps you from
doing the things you would do normally, such as going to work or school.
Q & A
Contact My Girls Blood www.mygirlsblood.org www.facebook.com/groups/MyGirlsBlood
My Girls Blood Philippine Ambassador: [email protected] www.facebook.com/andreaechavez www.fortheloveofstar.com
Useful Resources: mygirlsblood.org www.wfh.org victoryforwomen.org
