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Emily Bartko

Emily Bartko celebrated her third birthday by having her ears pierced. She attends school three days a week and takes a dance class. For Emily and her family, these are exciting milestones that not long ago seemed improbable.

While an infant, Emily was diagnosed with congenital fibrinogen deficiency. This is a rare, potentially life-threatening bleeding disorder that affects an estimated one person per million.

"Shortly after birth, we noticed significant bleeding from Emily's umbilical cord site. It was a frightening experience," said Alison Bartko, Emily's mother. "She was brought to the hospital where our physicians ran many tests, and results showed that her fibrinogen level was zero. Emily was diagnosed with afibrinogenemia, the most severe form of congenital fibrinogen deficiency."

During the next two years, Emily frequently endured bouts of bleeding and bruising. From riding in a car seat to crawling on the floor, basic childhood activities would cause serious bruising.

"It was often a struggle to go out of the house and the disorder impacted our entire family," Alison said. "We never wanted to be too far away from her physicians, so we weren't always able to attend many family functions."

In early 2009, the U.S. Food and Drug Administration (FDA) approved RiaSTAP. This product is the first and only fibrinogen replacement concentrate available in the U.S. It is indicated for the treatment of acute bleeding episodes in patients with congenital fibrinogen deficiency, including afibrinogenemia and hypofibrinogenemia. RiaSTAP is not indicated to treat dysfibrinogenemia.

RiaSTAP effectively supplements missing or low fibrinogen protein and is the only fibrinogen replacement therapy that includes specific virus inactivation/removal steps to reduce the risk of exposure to infection agents. RiaSTAP has long been marketed outside of the U.S. under the trade name Haemocomplettan® P.

Emily and her family played an important role in the approval of RiaSTAP in the U.S. The Bartko family traveled cross country from their Las Vegas home to the Washington, D.C. area to appear before an FDA advisory committee. The Bartkos felt compelled to share Emily's story as a real-life example of the impact of this new treatment.

"I'm nervous about traveling with Emily, but I thought it would be important for the committee to see her and who RiaSTAP will be helping," Alison said. "Treatment has changed Emily's life. She used to be achy and immobile some days, but now she's up and around, going to school and participating in normal childhood activities."

Alison added, "Even after her first dose, you could see an immediate change. She was walking and running around with her sister like any child."

As Emily continues to attend school and take dance class, Alison is thrilled that her family was able to help CSL Behring bring RiaSTAP to the U.S. market.

"I think it's great because there was a point in time where I thought Emily wouldn't walk much and would have to be in a stroller or a wheelchair," Alison said. "Now that she is dancing and running, we're really ecstatic. It's wonderful that now everyone with this disorder has access to RiaSTAP. I'm so glad we could contribute to making that happen."

Condition: Congenital Fibrinogen Deficiency
Therapy: RiaSTAP™ (Fibrinogen concentrate)
Country: United States
Emily Bartko
"Treatment has changed Emily’s life. She used to be achy and immobile some days, but now she’s up and around, going to school and participating in normal childhood activities."

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