It’s Time for a Family Reunion

April 24, 2013

One of the things that surprised me most about joining the bleeding disorders community was the sense of family.聽 Thomas鈥檚 diagnosis was the first in our family history (although we鈥檇 later find out I鈥檓 a carrier), so the shock of hemophilia was hard to shake, but the open arms we met made it a bit […]

A World Away; But That鈥檚 Not So Far

April 17, 2013

My fellow hemo moms are like my sisters. They are the women I can call, text, or email when I need an outlet for my fears and frustrations.聽 There seems to be an instant sisterhood amongst hemo moms as soon as you connect a group of them – whether that connection takes place in person […]

Cookie Theft Leads to Laughter

April 9, 2013

Most moms of children with bleeding disorders have a sick and twisted sense of humor. Many of us use humor as a coping mechanism. Honestly, I don’t know how I could have managed all these years without many moments of聽 levity and giggles. For instance, one of the scariest potential bleeds Thomas ever had is […]

Normal is Boring

April 3, 2013

A few months ago, Thomas was just getting over a foot bleed, ironically caused from snow boots that were too tight. (I mean, really? 聽Snow boots?) After a week of not being able to do his nightly chore of taking out the kitchen trash, I declared his foot healed enough to take out the garbage. […]

Raising Awareness while Raising Children

March 31, 2013

I can鈥檛 say that I was 鈥渁ware鈥 of hemophilia before Thomas was born. Since there was no family history, the only thing I could vaguely recall about hemophilia was that Ryan White had it. My knowledge beyond that was slim to none. In the days right after the diagnosis, I didn鈥檛 want to look at […]

Proud Mom of an Alphabet Belcher

March 27, 2013

From the time Thomas was an infant, I had been told hemophilia camp was not to be missed.聽 Kids and adults alike told me how wonderful camp was for them and how it was their most anticipated week of the year.聽 There are over eighty summer or family camps for persons with bleeding disorders in […]

Affording to Bleed

March 20, 2013

I think we can all agree that factor is an expensive drug. The Explanation of Benefits (EOB’s) that arrive in the mail each month are horrifying to look at. The ones we get are on the far end of the “oh-my-goodness-that’s-a-lot-of-money” spectrum. And those are just the ones that include Thomas’s factor supply for scheduled […]

Siblings: Unaffected, but certainly AFFECTED

March 13, 2013

  As a mom, the single hardest thing for me about hemophilia hasn’t been the unpredictability, or the pain, or the insurance, or the infusions. 聽The thing I struggle with and lose the most sleep over are my “unaffected” girls. I’ve got this hemophilia thing down – recognize the bleed, treat it. Rinse, repeat. 聽But […]

That Almost Never Happens

March 6, 2013

                At the very first meeting we had at the Hemophilia Treatment Center (HTC) when Thomas was a week old, Nathan asked the HTC team, “Does the medicine ever stop working? Can you build up antibodies to it?” Not wanting to worry us and having a good track […]

The Truth About Advocacy

February 27, 2013

              Advocacy used to scare the devil out of me. I avoided anything that had to do with going to my state capitol or writing a letter to a legislator.聽 Advocacy sounded like downright torture and I didn鈥檛 want any part of it. A perspective change came in the […]

Earning My Mommy Medical Degree

February 25, 2013

                  Moms need a safe place to land sometimes. With that in mind, HFA is launching a blog dedicated to all things mom!聽In this safe spot, moms of a child with a bleeding disorder will be able to read stories and draw inspiration from like-minded (and similarly […]

Welcome to Infusing Love: A Mom’s View

February 19, 2013

                Moms need a safe place to land sometimes. With that in mind, HFA is launching a blog dedicated to all things mom!聽In this safe spot, moms of a child with a bleeding disorder will be able to read stories and draw inspiration from like-minded (and similarly crazed) […]

Hemophilia: A Suite That Fosters Empathy

January 28, 2013

(Thomas Ford, on the left, with his cousin, Leland Smith on the right) I remember visiting my cousin Leland鈥檚 house from a very young age. Spending time with family has and always will be one of the most important things to me, but spending time with Leland was always different. My first memories of my […]

The Wilkes Family, “Thanks ObamaCare”

April 9, 2012

My son Thomas was born in 2003. After his circumcision, he continued to bleed. Within a day, my husband Nathan and I were told that our newborn son had severe hemophilia, a genetic blood clotting disorder. A local hematologist was at our bedside within 30 minutes of us getting the call. She was there to […]

Adopted into Hemophilia

October 15, 2011

Matt and Anna Landseadel knew little about hemophilia when they chose to bring six-month-old Chris into their home. “All I heard was ‘Six-month-old baby,’” Anna says with a smile, explaining how they came about fostering a child with severe hemophilia A. Chris, now seven, has since been adopted into the Landseadel family, along with his […]

Whatever He Wants: The Cleghorns

July 30, 2011

Choices are important to the Cleghorn family. Before their son Nicolas was born, Tracy and Lance Cleghorn envisioned a world of possibilities for him. “I want him to do whatever he wants to do, whether that’s play football, play rugby, place lacrosse…” says Tracy. “I want him to make that choice. I don’t want that […]

Julie Mora, Video Created by Joe Tavarez

July 30, 2011

Julie Mora is a Spanish-speaking mother from Texas. Joe is part of HFA’s Young Leader program and created this video after a program he was a part of at Symposium!

Family Focused

May 28, 2011

Kelly Champagne talks about the painful accusations that lead to her son being diagnosed with severe hemophilia. At the time her son Micah was diagnosed she could not see light at the end of the tunnel but has now learned to manage his disorder.

Our Journey: The Landseadel Family

May 5, 2011

Anna and Matt have adopted several children, two who have hemophilia. Anna and Matt try to normalize hemophilia as much as they can and realize that Chris and Xander don’t know anything different.

Kyle & Jesse: A Young Perspective

April 23, 2011

Kyle and Jesse are two boys who live with hemophilia. These two youngsters are showing a great example to their peers about the importance of advocacy!

A Mother’s Perpective

March 11, 2011

Pam Smith talks with her heart about raising a son with hemophilia.

Women and Bleeding Disorders

March 11, 2011

This video features Sal Livolsi & Linda Wyman-Collins; helping women with bleeding disorders is close to both of these community members hearts. Sal has a wife and son with hemophilia and Lew talks from personal experience of having a bleeding disorder.

Much More Hopeful: The effects of Health Care Reform on the Dunham family

February 11, 2011

Health care reform is a controversial issue, but for families dealing with chronic medical conditions, there is no controversy.聽 For Jenni Dunham of Tennessee, whose husband Chris and son Jacob both have von Willebrand disease, the future has gotten “much more hopeful” since the reform. Jenni estimates that Jacob, now three, would have reached the […]

A Better Life

February 11, 2011

Tony and Janya Roland have a 4 year old son with hemophilia. Jayna grew up with a father who hid his hemophilia and does not want her son to be forced to do the same.

A Little Bit of Relief

January 15, 2011

For parents of children with hemophilia, the future is a constant worry.聽 While this will always be the case, the recent healthcare reforms have provided a little bit of relief.聽 Heidi and Andrew Forrester from Washington are the parents of William, a two-year-old with severe hemophilia A.聽 While William was lucky enough to be covered […]

The Browns

January 7, 2011

As a new mother, Bert Brown was filled with joy, excitement, hope, and the wonderment of this miraculous experience. Imagine then, as you are recovering, being told by your doctor that the precious baby you just delivered several hours ago has hemophilia, a genetic bleeding disorder.聽 Your world has turned upside down and your thoughts […]

Bleeding Disorders in the News

November 20, 2010

Our voice is being heard!聽 The media is helping us share our story.聽 Check out our community members who were featured in the news!

Von Willebrand Disease: A Family Affair

October 28, 2010

Von Willebrand Disease (vWD)聽is the most common type of bleeding disorder, affecting males and females equally (it is estimated that about 1-2% of the world’s population has vWD). However, because symptoms can be mild, many people affected have not been diagnosed. People with vWD have decreased or malfunctioning Von Willebrand factor (VWF) activity and therefore […]

Let Him Go Let Him Grow

July 22, 2010

Dennis and Denise have a teenage son with hemophilia, they encourage their son to focus on school because he needs to find a stable job with good insurance.

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