Category: Community Voices

Fatherhood & Hemophilia

Being a father has been the most challenging and most rewarding task God has ever asked of me. I would do it all over again in a heartbeat. I have found the relationship between my daughter, Bethany, and me to be such paradox at times, but now that we’re both adults, I can’t express how […]

Community Member Spotlight: Shawn Nease, Organizer of Delves for Donors

For the second year in a row, Shawn Nease organized a charity game of Dungeons & Dragons, a fantasy tabletop role-playing game, to raise money for HFA’s Helping Hands Program. Delves for Donors II: Out for More Blood offered gamers in Maryland and Eastern Pennsylvania the opportunity to purchase a seat in a two-hour game […]

Caregiver Heroes: William

Meet William from Tennesse. William has a 2-year-old son, Landon, who has severe hemophilia A. We asked William to share some insights on his life as a caregiver.What is your day-to-day schedule like?For the most part, our schedule is regular. There are some days that are longer than others. Since Landon is on on-demand treatment we […]

Caregiver Heroes: Kelly

Meet Kelly from Nevada, who has von Willebrand Disease (vWD) and Delta Granule Storage Pool Deficiency. Kelly has a 19-year-old daughter, Jacey, who has the same diagnosis as her mom; a 7-year-old daughter, Maddie, who has vWD, three sons, and a husband. We asked Kelly to share some insights on her life as a caregiver.What […]

Qualitative Platelet Disorder: We Just Don't Quite Fit In

Patrick is a typical 12 year old who happens to have a rare bleeding disorder called, qualitative platelet disorder; the diagnosis is descriptive rather than specific – we have been told it is a one in a million condition and they do not know why his platelets do not function properly. We also don’t know […]

An Inhibitor on the High Seas

Justin Levesque (pictured in the orange hat), poses with the crew aboard a ship bound for Iceland Justin Levesque has severe hemophilia with an inhibitor. Justin recently had an opportunity of a lifetime when he spent nine days aboard a ship to Iceland as part of an art project that he developed. In this Q […]

A Caregiver's Perspective: The Partner

I knew I was on to something good when I arrived home from meeting Brent for the first time. We had a fun night out after a spontaneous meeting through a mutual friend. When I got home, I broke the unwritten rule of waiting a while to text someone new. I was thrilled when he […]

A Caregiver's Perspective: The Unaffected Sibling

My brother Evan was born on July 3rd, 2007. Two days after he was born, he was diagnosed with severe hemophilia A. I was eight years old when he was born and had never heard of this condition. It was difficult for me to grasp that my little brother would not live a ‘normal’ life. […]

vWD Doesn't Define Who We Are

Being a female with a bleeding disorder is not easy. Our symptoms range from being mildly inconvenienced to having life-threatening bleeds. Menorrhagia (heavy periods) is the most common symptom of a bleeding disorder, and women with untreated or under-treated disorders may be at greater risk for serious complications. Unfortunately, thousands of girls and women do […]

According To Us: Hemophilia Teen Connection Video

http://www.youtube.com/watch?v=8lK363mf03kWhat is hemophilia? While at HFA Symposium 2012 the Teen Connection program created this educational video about hemophilia and other bleeding disorders.