Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
When I committed to writing this week鈥檚 blog, I had no idea what I would blog about until I went to see the movie 鈥榃onder.鈥 Wonder is about a boy named Auggie who was born with a facial disease called聽mandibulofacial dystosis, also known as 鈥淭reacher Collins syndrome.鈥 Due to Auggie鈥檚 medical needs, which require the […]
Dear Addy, I’m already experiencing problems with my insurance in the new year. Where can I go to report these issues? Signed, New Year, Old Issues Dear New Year, You are not alone. HFA regularly hears from community members with concerns about access to care due to limitations or mandates set by their insurance company. […]
Puerto Rico, Isla del encanto, conocida por sus bellas playas, gente amigable y amable, en donde se baila la mejor salsa y se degustan los mejores sabores caribe帽os. Arropada por el Mar Caribe y el Oc茅ano Atl谩ntico. En donde se habla espa帽ol y es un territorio ligado a Estados Unidos como Estado Libre Asociado y […]
Dear Addy, I get assistance with my out-of-pocket costs from the manufacturer of my clotting factor product. My insurer just notified me that it will no longer apply that assistance to my deductible and out-of-pocket maximums! Can they do that? Signed, Distressed Over Deductibles Dear Deductibles, You are running up against a new strategy that […]
I have seen signs for the last few years, but on a cold day just before Christmas, I saw my 14-year-old son not as a little boy, but as a young man. There wasn鈥檛 anything extraordinary happening in the moment. He sat at one end of our sectional couch and I was sitting on the […]
鈥淪o, he鈥檚 still wearing the helmet?鈥 The question, posed by HTC staff at our recent annual visit gave me pause. Yes, my son is almost 5 years old and still wearing his helmet any time his feet are on the floor. I know this is a controversial topic 颅 I鈥檝e seen the comment threads on […]
Dear Addy, I want to participate in a legislative day, but I’m a terrible public speaker. Help! Signed, Nervous Nelly Dear Nervous, You are not alone 鈥 many people worry about public speaking! Use these tips to help you become more confident and comfortable speaking during legislative meetings. Hopefully you鈥檒l find this advice beneficial 鈥 […]
It is safe to say that most of hemophilia has been unexpected. Even when you are planning for the unexpected you get another unexpected in its place, sort of a Murphy鈥檚 Law type deal. And yet, I am always finding things about hemophilia that I never expected from our experience. One of the most profound […]
It’s been two months since wildfires ripped through Northern California leaving a path of destruction in Sonoma and Napa counties like I鈥檝e never seen before and leaving a scar on all of our hearts. I got to see firsthand the importance of community and was proud to see our bleeding disorder community come together to […]
Dear Addy, What is the best way for me to contact my legislators when policy issues affecting the bleeding disorders community arise? Signed, Alert Advocate Dear Advocate, HFA’s Take Action Center聽has all you need to contact your legislators, including talking points on issues affecting the bleeding disorders community. Watch this short video on using the […]
Some of the best sessions I have attended at conferences have been rap sessions. These sessions bring together certain sub-groups in the bleeding disorder community and allow them to have open conversations, asking questions and sharing information with each other. At one rap session, many years ago, a mom in the parents rap session, was […]
Dear Addy, I鈥檓 a new mom and my husband and I just learned that our baby has hemophilia A. We are overjoyed at becoming parents and overwhelmed with next steps. Could you offer tips for building a relationship with a hematologist? 聽Signed, New Mom 聽Dear Mom, You鈥檝e come to the right place! Knowing where to […]
I get some pretty stunned responses when I tell family and friends that I am grateful for hemophilia. They can鈥檛 understand how it is possible that I can be thankful that my son, Thomas, has unexpected, ill-timed, and painful bleeds.聽 How could anyone find good in dealing with a nonsensical insurance company? Obviously, I could […]
The past six months have been hard. Like hemophilia was managing us instead of us managing hemophilia. I can鈥檛 remember the amount of times I sobbed out of frustration, fear and being powerless to help my son. We are still muddling through and each day is a battle. A battle where it seems like we […]
Dear Addy, Are there ways for my teenage son to save money for college, without endangering his health coverage? My son is currently enrolled in Medicaid under our state鈥檚 Katie Beckett program for children with long-term disabilities. Signed, Savvy Saver Dear Saver, Here鈥檚 one option you and your son may wish to explore: opening an […]
When I got married 19 years ago, I never thought I would be a foster parent to over 40 children with special needs. It never occurred to me that I would have the blessing of being a stay-at-home mom for 14 years. I never would have thought I would end up with six forever children […]
Swimming is often recommended as an ideal form of exercise for people with bleeding disorders for a few different reasons. To begin with, swimming allows one to strengthen their muscles in a way that doesn鈥檛 put weight on the joints, and therefore reduces the likelihood of bleed due to impact or pressure. It also enables […]
By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits!聽Our guests on this聽podcast聽are聽Kathryn Clark, a retired dietician, and Eric Burgeson, an active young adult with hemophilia. Kathryn and Eric聽iscuss ways to keep costs low at the grocery store […]
By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits!聽Our guest on this聽podcast is聽Karen Sullivan, retired professor of Health/Fitness at Marymount University. Tune into hear Karen discuss聽how to build sustainable fitness habits and how to get back on […]
If you look up National Caregiver鈥檚 month on your computer, you will find several items from the Caregivers Action Network (CAN) before anything else. If you look through the stories, tips and suggestions you will see that most of them relate to adult children caring for parents. You can find the 2016 proclamation from President […]
Dear Addy, I鈥檓 applying for health insurance for the first time this open enrollment period. With a bleeding disorder, what should I look for in an insurance plan? Signed, First-time Subscriber Dear Subscriber, The聽Open Enrollment Period is a timeframe each year when health insurance plans or聽HMOs (health maintenance organizations)聽are required by law to accept applications […]
I lost my job on a Monday. The following Tuesday, I was making the hour-long trek to our HTC for bi-monthly prophy for my 15 month old son, Ben. I had a lot of time to think about what had just happened, what in the world I was going to do, and where to go […]
My 11-year-old, Natalie, is not your typical 11-year-old. She is whip smart, savvy, and mature beyond her years. I suppose that comes with being the youngest of three siblings. You have to wise up when your older siblings are trying to pull one over on you since the day you were born. Natalie has recently […]
Dear Addy, My son with hemophilia is about to turn 26 and will need to find his own insurance plan. As a parent, how can I help him navigate this process? Signed, Always-an-Advocate聽 Dear Advocate, This is an important but complicated task. HFA created the following infographic as a tool for walking through the different […]
It has taken me six years to groom the perfect person to give my youngest son, Laithan, his factor. When Laithan received his port my husband started out being Laithan鈥檚 holder and I could never transition him to the other side of the needle. I don鈥檛 think I wanted him to do it either, since […]
It’s hard to envision what life is going to look like for my little Maddox when he enters preschool or elementary school in a few years. Right now I focus on the moment and each day as Maddox gets older. He had his first birthday last week and off he went. He took his first […]
Do you know those moments when you think, 鈥渁ll is right in our lives today?鈥 We have had a few of those moments recently. We had a horribly tough year in 2016. It just seemed that whichever way we looked, something rough was happening to us or our extended family members. 2017 has been a […]
Todos los a帽os celebramos el mes de la hispanidad en Estados Unidos (Hispanic Heritage Month en ingl茅s). El mes de la hispanidad comienza en 15 de septiembre y termina en 15 de octubre. Este mes es para celebrar las tradiciones, celebramos la cultura y todos los logros de los hispanos de este pa铆s. Los hispanos […]
Dear Addy, I have two preteen kids with bleeding disorders and I want to instill in them independence with respect to their care. Do you have any advice on ways to build this into our routine? Signed, Introducing Independence Dear Independence, This is a great question to be asking now, as transitioning to independence is […]
When I hear the word “pain” I immediately relate. 聽We all know pain and its many forms. But do we know how to move past the physical hurt and the emotional guilt? 聽The reality of our world is that pain is a part of life – we can dwell in suffering or we can […]
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