Sharing about my bleeding disorders led to an unexpected connection

A ride to the airport becomes a serendipitous moment

Last week, as I was leaving the Coalition for Hemophilia B’s annual symposium in Dallas, I found myself in an Uber headed to the airport. Usually, I wouldn’t discuss my bleeding disorders — hemophilia B and von Willebrand disease — with strangers, but a chance encounter led to a remarkable conversation.

When the driver asked why I was in Dallas, I hesitated for a moment, but then decided to explain that I’d gone to a conference for people who are affected by hemophilia B. To my surprise, the driver revealed that he, too, had a bleeding disorder. He had moved to the U.S. from Afghanistan 40 years ago, at the age of 19, and discovered that he had factor VII deficiency after seeking medical help for his bleeding problems.

Factor VII deficiency

Factor VII deficiency, also known as proconvertin deficiency, is a rare bleeding disorder characterized by a deficiency or dysfunction of factor VII, a protein involved in the blood-clotting process. Factor VII is one of the clotting factors that plays a role in initiating the coagulation cascade.

When someone has factor VII deficiency, their blood may not clot properly, leading to prolonged bleeding episodes after injury or surgery. The severity of symptoms can vary widely among people who have this disorder. Some may experience only mild symptoms, while others may have more severe bleeding.

Treatment for factor VII deficiency often involves replacing the missing factor through infusions of recombinant factor VII concentrate. This helps to restore the clotting process and reduce the risk of excessive bleeding.

Factor VII deficiency is inherited in an autosomal recessive pattern, meaning both parents must carry the faulty gene for a child to inherit the disorder. However, in some cases, it can also occur spontaneously without a family history (a condition known as acquired factor VII deficiency).

Because it is a rare disorder, diagnosis and management are typically overseen by specialized hematologists or medical professionals at hemophilia treatment centers. Early diagnosis and appropriate management can help those with factor VII deficiency lead normal, healthy lives.

Common ground

As the Uber driver and I talked, we found common ground in our shared experiences. He described how he uses factor VII replacement products, but even with treatment, he experiences delayed healing. We discussed the increasing challenges we face with age, particularly in our muscles and joints. He also mentioned the financial burden of his treatment and his fear of potentially catastrophic events like brain bleeds.

What struck me most was that he relied on his primary care doctor to manage his bleeding issues. I suggested he consider connecting with a hemophilia treatment center for specialized care, which he found promising.

Our brief encounter underscored the importance of sharing our experiences and seeking appropriate support for managing bleeding disorders. It served as a reminder that unexpected connections can lead to profound insights and meaningful connections. Perhaps it’s a cue for me to consider being more open about my bleeding disorders in my interactions with others.