Page 7 - HFA Annual Report 2014
P. 7
COMMITTED TO RAISING AWARENESS
M arch was Hemophilia Awareness Month and for the Bleeding disorders among women can present natural
second year in a row, HFA organized a strong robust,
challenges not faced by men simply because of the bleed-
multi-fold campaign to raise awareness outside the bleeding ing associated with menstruation and childbirth. The most
disorders community. We acknowledge that even in 2014 common symptom among women with bleeding disorders
many people still have antiquated, even alarming, notions is an abnormally heavy and prolonged menstrual period,
about hemophilia and little-to-no knowledge of other bleed- called menorrhagia.
ing disorders. We created clear and easy-to-understand
Von Willebrand Disease (vWD) is another bleeding disor-
infographics that could be readily shared on social media, der that causes clotting problems and it affects males and
along with more traditional printed educational cards and females equally. People with vWD have decreased or mal-
presentation materials that could be shared in schools and functioning von Willebrand factor (vWF) activity in their
workplaces around the country. We are pleased to say that blood and because the symptoms can be mild, like bruising
HFA has the most active and engaged social media usage in or bleeding from the gums, many people remain undiag-
the bleeding disorders community, with regular posts on nosed until something as commonplace as an injury or
Facebook, Twitter, Instagram and Pinterest. In 2014 surgery causes a major and unexpected bleed, with
our Hemophilia Awareness Campaign reached potentially calamitous results.
more than 350,000 people on Facebook alone! vWD has been divided into three categories, depend-
“ WOMEN HAVE BEEN THE severe within each type of vWD. Interestingly, where blood
ing on the nature of the defect in the vWF protein,
and bleeding can be categorized as mild, moderate or
SILENT ‘CARRIERS’ OF HEMOPHILIA.
HFA is committed to providing women with the
information and support they need to reach type is not an issue in hemophilia, blood type does play a
role in the levels of vWD factor found in the blood. Type O
a diagnosis and throughout the stages of their blood often has inherently lower levels of vWF.
life with a bleeding disorder.”
– Rachel Neylan, mild hemophilia and mother
Of course hemophilia affects primarily males but “ THANK YOU, HFA,
bleeding disorders affect women as well. A female FOR MAKING RAISING
becomes a “carrier” of hemophilia simply by inher-
iting an affected X chromosome. About one-third AWARENESS SO EASY.
of carriers experience bleeding symptoms themselves Your graphics are so well done. I share them
and female carriers with clotting factor levels of less than all the time on social media to my family and
60% of normal may have symptoms equivalent to a diag- friends. I am a better advocate because of them.”
nosis of “mild hemophilia.” These women are often called – Mark, hemophilia dad
“symptomatic carriers.”
M arch was Hemophilia Awareness Month and for the Bleeding disorders among women can present natural
second year in a row, HFA organized a strong robust,
challenges not faced by men simply because of the bleed-
multi-fold campaign to raise awareness outside the bleeding ing associated with menstruation and childbirth. The most
disorders community. We acknowledge that even in 2014 common symptom among women with bleeding disorders
many people still have antiquated, even alarming, notions is an abnormally heavy and prolonged menstrual period,
about hemophilia and little-to-no knowledge of other bleed- called menorrhagia.
ing disorders. We created clear and easy-to-understand
Von Willebrand Disease (vWD) is another bleeding disor-
infographics that could be readily shared on social media, der that causes clotting problems and it affects males and
along with more traditional printed educational cards and females equally. People with vWD have decreased or mal-
presentation materials that could be shared in schools and functioning von Willebrand factor (vWF) activity in their
workplaces around the country. We are pleased to say that blood and because the symptoms can be mild, like bruising
HFA has the most active and engaged social media usage in or bleeding from the gums, many people remain undiag-
the bleeding disorders community, with regular posts on nosed until something as commonplace as an injury or
Facebook, Twitter, Instagram and Pinterest. In 2014 surgery causes a major and unexpected bleed, with
our Hemophilia Awareness Campaign reached potentially calamitous results.
more than 350,000 people on Facebook alone! vWD has been divided into three categories, depend-
“ WOMEN HAVE BEEN THE severe within each type of vWD. Interestingly, where blood
ing on the nature of the defect in the vWF protein,
and bleeding can be categorized as mild, moderate or
SILENT ‘CARRIERS’ OF HEMOPHILIA.
HFA is committed to providing women with the
information and support they need to reach type is not an issue in hemophilia, blood type does play a
role in the levels of vWD factor found in the blood. Type O
a diagnosis and throughout the stages of their blood often has inherently lower levels of vWF.
life with a bleeding disorder.”
– Rachel Neylan, mild hemophilia and mother
Of course hemophilia affects primarily males but “ THANK YOU, HFA,
bleeding disorders affect women as well. A female FOR MAKING RAISING
becomes a “carrier” of hemophilia simply by inher-
iting an affected X chromosome. About one-third AWARENESS SO EASY.
of carriers experience bleeding symptoms themselves Your graphics are so well done. I share them
and female carriers with clotting factor levels of less than all the time on social media to my family and
60% of normal may have symptoms equivalent to a diag- friends. I am a better advocate because of them.”
nosis of “mild hemophilia.” These women are often called – Mark, hemophilia dad
“symptomatic carriers.”
