Living with Factor V Deficiency

Factor V deficiency, also known as parahemophilia or Owren’s disease, is so rare that it affects just 1 in 1 million people. Caused by mutations in the F5 gene, this bleeding disorder can be either inherited or acquired. People living with the condition may experience a myriad of symptoms from bleeding gums, nosebleeds, and easy bruising to bleeding under the skin and excessive bleeding after trauma or surgery.

In severe cases, parahemophilia can cause bleeding into joint spaces (hemarthrosis), or an increased risk of bleeding inside the skull (intracranial hemorrhage), the lungs (pulmonary hemorrhage), or the gastrointestinal tract, which can be life-threatening.

If a person living with parahemophilia is in an accident or has another medical emergency it is crucial for emergency teams to have immediate access to their medical information to ensure the safest and most accurate response. This is Jeffrey’s story, a MedicAlert member since 1983.

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So, Who is Jeffrey?

Jeffrey is 41 and living with parahemophilia. Diagnosed as a baby, Jeffrey understands that his condition is so rare, no commercially available factor V concentrate exists. This means, the only available treatment for his parahemophilia is fresh frozen plasma (FFP)—the fluid that carries blood components throughout the body.

Despite his condition, Jeffrey still manages to live life to the fullest, even working a full-time job to support his family. Most days are productive and symptom-free, so Jeffrey never takes anything for granted. However, he knows that things can change in an instant, so he does everything he can to ensure his safety should the unexpected occur.

A Normal Day at Work Takes an Unexpected Turn

One day Jeffrey was at work and feeling fine. Without warning, this normal day turned into a crisis. A co-worker found Jeffrey unconscious on the floor by his desk. No one at work was sure what was going on, so they called 911. When paramedics arrived, they immediately noticed Jeffrey’s MedicAlert ID bracelet, which quickly set the wheels in motion to save his life.

With just one available treatment option for parahemophilia, paramedics on the scene didn’t have a second to spare. The responding EMT, Nick, quickly contacted MedicAlert, which relayed all of Jeffrey’s vital medical information. MedicAlert then communicated all of Jeffrey’s information directly to the emergency room before his arrival.

The ER staff at the hospital immediately ordered fresh frozen plasma from the in-house pharmacy. Supplies were very limited, so the pharmacy staff also began identifying as many FFP sources as possible. With an ample head start, the staff was successful in securing more of this life-saving liquid.  

Thanks to MedicAlert we were able to make a quick diagnosis of internal bleeding and get the fresh plasma Jeffrey needed. MedicAlert helped save his life.

A Team Effort Pays Off

With the help of MedicAlert, the efforts by the pharmacy staff and emergency response team were not in vain. Doctors spent the next five full days pumping the procured plasma into Jeffrey’s body.

“The patient was unconscious when we arrived,” explains Nick, “so without MedicAlert we wouldn’t have known about his bleeding disorder.”

“Thanks to MedicAlert we were able to make a quick diagnosis of internal bleeding and get the fresh plasma Jeffrey needed. MedicAlert helped save his life.”

After doctors discharged Jeffrey from the hospital, he continued to receive lower doses of FFP over the next few weeks. The quick action of MedicAlert, the pharmacy staff, and ER teams ensured that Jeffrey would have the supply he needed to complete his treatment.

Today, Jeffrey is doing just fine. It was all about getting the right treatment at the right time.

Because Jeffrey lives with one of the world’s rarest conditions, he has been a MedicAlert member for most of his life. On that indelible day at work, it became even more apparent to Jeffrey that his condition requires quick action.

If an accident or other medical emergency occurs, Jeffrey knows he doesn’t have a second to spare. He realizes now, more than ever, how important MedicAlert has been for him and his family.

Facts About
Factor V deficiency

Factor V deficiency is a bleeding disorder, passed down through families. It affects the ability of the blood to clot efficiently.

There are several other names ofr the condition. It is also referred as Labile factor deficiency, Owren disease, Owren's disease Parahemophilia and Proaccelerin deficiency.

Factor V deficiency commonly causes nosebleeds; easy bruising; bleeding under the skin; bleeding of the gums - is a serious condition, and is dangerous. Specific protocols are needed, and excessive bleeding can occur following surgery, trauma, or childbirth.

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