Page 3 - HFA Dateline 2014 Q3 Fall
P. 3
@
An Advocacy Corner For
Real Community Questions
T o help you and your family understand complicated advocacy issues like the Affordable Care Act (ACA), “Dear Addy”
was created as a resource for the bleeding community. Each question submitted are real concerns and scenarios from
community members across the country. Questions submitted to this column are edited in order to protect privacy and
should be considered educational only, not individual guidance.
EDUCATING THE ER UNAFFECTED SIBLINGS
Dear Addy, Dear Addy,
We went out of town for vacation and I had to take my son I have two sons with hemophilia and one daughter
to the ER for a bleed. Unfortunately, none of the doctors were who is not affected by a bleeding disorder. My two
familiar with hemophilia. I knew more than they did. Instead sons get so much attention and I know that my daugh-
of comforting my son, I spent my time educating doctors. ter feels left out. How can I help my daughter under-
Is there something I can do better next time? stand that we love her just as much as her brothers?
Signed, Signed,
ER Educator Dad of Disheartened Daughter
Dear Educator, Dear Disheartened Dad,
You are an educator and always will be one when it comes to your You are not alone. Many parents who have both affected
son’s hemophilia. Because only a small fraction of people in the and unaffected kids face the same challenge. HFA can help
United States has hemophilia, it is a condition with which most you cope and find a way for the whole family to flourish
doctors have little understanding or knowledge. So your experi- in what is otherwise a tough situation. Have a look at our
ence is not uncommon, but nonetheless it’s not an easy position Siblings Toolkit on the HFA website.
to be in. On the site you will find presentations (past webinars
There are things you can do before an emergency occurs, and
and slides), downloads (articles, blog entries, tools/docu-
steps you can take when you and your son get to the ER to make ments), and links to other resources. For example, there is
sure he receives the best care possible. a webinar that reviews the social and emotional stages of
Among its many resources on emergency preparedness, HFA has childhood development, addresses common issues siblings
a Surviving The ER Toolkit that provides tried and true tips from face, and gives tried and true tips for parents on how to deal
others living with hemophilia on the steps to take before an emer- with children living with a bleeding disorder. Best of luck!
gency happens. The toolkit includes what to do before an emer- Sincerely,
gency, what to do just before you leave for the ER, and what to do
when you get to the ER. Lastly, discuss your ER experience with Addy
your son’s hematologist. The hematologist may have additional
tips to help you manage the experience.
Sincerely,
Addy
Submit your questions to: dearaddy@hemophiliafed.org
Your name will be changed in the response.
Fall 2014 | Dateline Federation 3
An Advocacy Corner For
Real Community Questions
T o help you and your family understand complicated advocacy issues like the Affordable Care Act (ACA), “Dear Addy”
was created as a resource for the bleeding community. Each question submitted are real concerns and scenarios from
community members across the country. Questions submitted to this column are edited in order to protect privacy and
should be considered educational only, not individual guidance.
EDUCATING THE ER UNAFFECTED SIBLINGS
Dear Addy, Dear Addy,
We went out of town for vacation and I had to take my son I have two sons with hemophilia and one daughter
to the ER for a bleed. Unfortunately, none of the doctors were who is not affected by a bleeding disorder. My two
familiar with hemophilia. I knew more than they did. Instead sons get so much attention and I know that my daugh-
of comforting my son, I spent my time educating doctors. ter feels left out. How can I help my daughter under-
Is there something I can do better next time? stand that we love her just as much as her brothers?
Signed, Signed,
ER Educator Dad of Disheartened Daughter
Dear Educator, Dear Disheartened Dad,
You are an educator and always will be one when it comes to your You are not alone. Many parents who have both affected
son’s hemophilia. Because only a small fraction of people in the and unaffected kids face the same challenge. HFA can help
United States has hemophilia, it is a condition with which most you cope and find a way for the whole family to flourish
doctors have little understanding or knowledge. So your experi- in what is otherwise a tough situation. Have a look at our
ence is not uncommon, but nonetheless it’s not an easy position Siblings Toolkit on the HFA website.
to be in. On the site you will find presentations (past webinars
There are things you can do before an emergency occurs, and
and slides), downloads (articles, blog entries, tools/docu-
steps you can take when you and your son get to the ER to make ments), and links to other resources. For example, there is
sure he receives the best care possible. a webinar that reviews the social and emotional stages of
Among its many resources on emergency preparedness, HFA has childhood development, addresses common issues siblings
a Surviving The ER Toolkit that provides tried and true tips from face, and gives tried and true tips for parents on how to deal
others living with hemophilia on the steps to take before an emer- with children living with a bleeding disorder. Best of luck!
gency happens. The toolkit includes what to do before an emer- Sincerely,
gency, what to do just before you leave for the ER, and what to do
when you get to the ER. Lastly, discuss your ER experience with Addy
your son’s hematologist. The hematologist may have additional
tips to help you manage the experience.
Sincerely,
Addy
Submit your questions to: dearaddy@hemophiliafed.org
Your name will be changed in the response.
Fall 2014 | Dateline Federation 3
