Community Voices

Fatherhood & Hemophilia

June 18, 2017

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鈥檙e both adults, I can鈥檛 express how […]

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

January 9, 2017

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鈥檚 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

November 17, 2016

Meet William from Tennesse. William has a 2-year-old son, Landon, who has severe hemophilia A.聽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 […]

Caregiver Heroes: Kelly

November 3, 2016

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. […]

Conquering Mountains

May 24, 2016

My beautiful wife Jackie, and I have three boys: Desmond, 8-years-old, Liam, 5-years-old and Patrick, 3-years-old. Patrick has聽severe hemophilia A and inhibitors. We live in middle Georgia. Until three years ago we聽knew nothing about hemophilia. We had no family history and it was the furthest thing from our minds as parents. We have two聽strong, energetic,聽healthy […]

Colorado Dad Continues Advocacy Involvement

May 3, 2016

Nathan Wilkes has been advocating for his son Thomas, who has hemophilia and an inhibitor, for more than a decade. Nathan began his advocacy by simply writing an essay about his family’s struggle with lifetime caps which was sent to a limited number of contacts within state government and a few friends. He soon found […]

Factor I Deficiency: A Voice for a Rare Community

April 8, 2016

My name is Rick Kelly, and my wife Josie, and I are the proud parents of Forrest. Forrest has a rare bleeding disorder called afibrinogenemia, or Factor I deficiency. This is the story of afibrinogenemia in three anecdotes that explain what afibrinogenemia is, the current state of treatment, and its outlook for the future. In […]

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

March 15, 2016

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鈥檛 know […]

An Inhibitor on the High Seas

February 16, 2016

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 […]

Living with Hemophilia: A Young Adult Perspective

August 31, 2015

The transition to adulthood is an exciting time for any聽young adult and can include living on their own for the first time, beginning a job, or starting a college/higher education experience. However, this also means young adults must learn quickly how to juggle the inevitable increase of personal responsibility. Dakota, age 20, is a PharmD […]

A Caregiver’s Perspective: The Partner

November 24, 2014

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

November 17, 2014

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 鈥榥ormal鈥 life. […]

Sisters By Chance, Friends By Choice

July 17, 2014

A carrier of the hemophilia gene is a female who has a genetic mutation on one of her X chromosomes. About 1/3 of carriers experience bleeding problems and are often referred to as symptomatic carriers. By definition, if a woman has clotting factor levels less than 50%, she has mild hemophilia. Ashley and Sarah are […]

Inhibitor Family Camp: Our Own Kind of Oz

December 20, 2013

What is Inhibitor Family Camp? Hemophilia Inhibitor Family Camp was founded in 2010 by聽Comprehensive Health Education Services (CHES), and is made possible through an educational grant provided by Novo Nordisk. There are currently two programs held annually, both take place at camps that are part of the Serious Fun Network (formerly known as The Hole […]

Hemophilia: A Suite that Fosters Empathy

January 28, 2013

(Thomas Ford, left, and his cousin Leland Smith, 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 cousin were of his […]

vWD Doesn’t Define Who We Are

January 17, 2013

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 […]

Despite Adversity, I Am Grateful

January 14, 2013

  I get some pretty stunned responses when I tell family and friends that I am grateful for hemophilia.聽 They can’t understand how it is possible that I can be thankful that my 9-year-old son, Thomas, has unexpected, ill-timed, and painful bleeds.聽 How could anyone find good in dealing with a nonsensical insurance company?聽 Obviously, […]

According To Us: Hemophilia Teen Connection Video

April 24, 2012

What is hemophilia? While at HFA Symposium 2012 the Teen Connection program created this educational video about hemophilia and other bleeding disorders.

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 […]

Andy Matthews: Training Ground

January 21, 2012

Growing up with hemophilia, Andy Matthews was lucky enough to live across the street from a hematologist. The doctor told his parents the best thing they could do for Andy was give him cryoprecipitate treatments at home. Cryoprecipitate was an early version of today’s factor treatments, using human plasma to treat clotting disorders. Andy was […]

Martin Addie: An Advocator

January 21, 2012

I grew up in Wisconsin the sixth of 2 girls and 5 boys, and moved with my parents and younger brother to Houston, Missouri 聽in 1978 after graduating high school. My younger brother, myself and an adult nephew have severe hemophilia and my sisters are carriers. My wife Janeen celebrated our 30th anniversary in June […]

Beyond Hemophilia, filmed by Justin Lindhorst

January 12, 2012

Michael Jones is a 13 year old with hemophilia A. Michael doesn’t let his hemophilia slow him down, he enjoys playing baseball and staying active. Justin Lindhorst was a part of HFA’s Young Leaders program at Symposium and part of HFA’s Media Task Force.

Aaron and Isaiah Reeves Meet the President

October 24, 2011

To read the Veinline article written by Aaron Reeves, about his son Isaiah’s and his meeting with President Obama click here:聽 Veinline Article聽

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 […]

Advocacy Issues by Andy Mathews

August 20, 2011

Andy Matthews discusses advocacy issues that he feels are important.

Given a Gift, Andy Matthews

August 16, 2011

Growing up with hemophilia is not always easy for Andy, but his positive attitude has always gotten him through the tough times. Andy looks at the life he has been given as a gift!

Full Fledged Boy, Terry Lamb

July 30, 2011

Having hemophilia doesn’t mean you or your child must live a sedentary life, cut off from all opportunities for fitness. Just ask Terry Lamb of Virgina, who is 59 years old and lifts weights six days a week. On his day off, he swims. When Terry was born, there was no such thing as prophylaxis […]

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!

A Hopeful Future

July 12, 2011

Ryan and EJ share their experiences growing up with hemophilia. The future of our community is hopeful with the advancements in care and support from others who understand!

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