A young woman receives life-changing care after rare bleeding disorder diagnosis
As a parent, you know when something isn’t right. Call it intuition or good old-fashioned parental insight, but Shane and Janet had an uneasy feeling their daughter Jadynn’s health wasn’t where it needed to be.
“Jadynn had severe nose bleeds and bruising in her arms and legs, along with emotional distress associated with each episode,” says Janet of her 11-year-old daughter. “And it had been happening since she was a year old.”
The couple sought the opinions of countless specialists, and each one offered a different prognosis for Jadynn’s frequent bleeding episodes. Each possible lead would fade faster than the last. “Everyone was frustrated,” says Janet. “Our doctors had no idea. They had never seen anything like this before.”
Days turned into weeks as doctors conducted tests in the hospital. Meanwhile, Jadynn was feeling the effects of all her time spent in clinical settings. During this period, she had nearly 20 blood samples drawn. But after all the pain and tears, Jadynn’s care team finally identified her condition.
Jadynn was diagnosed with combined factor V deficiency (also called Owren’s disease or parahemophilia) and factor VIII (hemophilia A). These inherited bleeding disorders occur when one or several clotting factors are missing or not working correctly. The combination of these two conditions is rare, but what makes it even more unlikely is that Jadynn is female. While many women are carriers of the genetic disorder, it is unusual for women to experience bleeding disorder symptoms.
Jadynn’s family doesn’t have a history of hemophilia, which is uncommon in bleeding disorder patients. She is one of the only known cases in the United States. Information is still limited but continues to be researched worldwide.
After learning Jadynn’s diagnosis, the family discovered another hurdle they weren’t sure how to face: infusions.
Over the years, Jadynn was prescribed medications she didn’t need due to her previous misdiagnosis, but she had never once been administered an infusion. “We really had no idea where to begin,” Shane says. “Not only did we have to figure out how to do all this, but now we have to start letting people into our home to take care of our child.”
But in early 2014, a trusted source recommended PromptCare, and this discovery changed the family’s lives. Nurses and pharmacists quickly stepped in to develop a custom home infusion therapy plan. Shane and Janet had strong feelings that all four members of their family, including their six-year-old son Kasey, should be involved in Jadynn’s new treatment plan.
Jadynn initially refused infusion therapy and was exasperated at the idea of infusions becoming a regular part of her life. “I just want to be a normal kid,” she would say. “I don’t want to infuse.”
But with so many nursing visits to the home, Jadynn eventually developed a bond with her care team—and a routine that provided comfort to the family. A typical week would include up to three home visits, with each infusion lasting no more than two hours.
“We feel involved, and having a routine helps reduce Jadynn’s anxiety. Our nurses truly go above and beyond for us.”Janet, Jadynn’s Mother
The entire family has come a long way—they’ve even learned how to give infusions to Jadynn. PromptCare nurses encourage self-infusion and provide the necessary education to patients and families to enable them to administer treatment on their own.
With departments devoted to caring for the financial, mental, and lifestyle hardships families may face during treatment, patients like Jadynn and her family have access to a variety of valuable services and resources at PromptCare.
The high cost of specialty medications and the frequency of treatments can often result in families spending thousands of dollars in out-of-pocket expenses. “I had no idea about the types of assistance out there,” said Shane. “The co-pay assistance programs have helped us in so many ways. Jadynn is doing great, and so is our family.”
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Managing rare disorders is a balancing act of multiple specialties, medications, and therapies. PromptCare is here to hold it all together for you with personalized attention, reliable follow-through, and 24/7 availability.
We know what it takes. We got you. Call us at 866-776-6782 to learn how we can help you or your loved one.