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.

1. Women and Inherited Bleeding
Disorders
Presented by Andrea T. Echavez
Ambassador, My Girls Blood
HAPLOS General Assemby
Sept. 27, 2014

2. My Girls Bood
Social network of women
around the world
Founded in 2011 by Cheryl D'
Ambrosio
431 members as of Sept. 27,
2014
Members are composed of
women with inherited bleeding
disorders, moms/
wives/sisters/caregiver of
persons with bleeding
disorders

3. Report from the World Congress

4. Melbourne 2014

6. Philippine Delegation with Cheryl D' Ambrosio

8. 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.

9. Blood Sisters

10. Inherited Bleeding Disorders
Affecting Women
Von Willebrand Disease
 Platelet function disorders
 Hemophilia A and B
 Other factor deficiencies

11. 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.

12. 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.

13. 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%.

14. Other bleeding disorders

15. Signs & Symptoms of Bleeding
Disorders in Women
Heavy menstrual periods
Passing 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.

16. 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.

17. 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.

18. Q & A

19. Contact My Girls Blood
 www.mygirlsblood.org
 www.facebook.com/groups/MyGirlsBlood
My Girls Blood Philippine Ambassador:
 andrea.echavez@gmail.com
 www.facebook.com/andreaechavez
 www.fortheloveofstar.com

20. Useful Resources:
 mygirlsblood.org
 www.wfh.org
 victoryforwomen.org