Steven’s story: 40 years of hemophilia treatment

March 16, 2015 at 11:17 am

Hemo_awareSteven* was born with hemophilia in the late 1960s.

At that time, there was no treatment for joint bleeds, the most common complication of hemophilia. If he did have a bleed, his parents could only pack his joints in ice and wait for the pain and swelling to subside.

Steven recounts that his parents wrapped his knees in foam when he was learning to crawl.

Steven’s family moved to Washington State in 1976, and he began receiving care from Bloodworks Northwest (then known as Puget Sound Blood Center).  Back then, BloodworksNW was among the first in the U.S. to establish a comprehensive care center for people with bleeding disorders. Over the years that care has evolved to meet the changing needs of the bleeding disorder community.

[T]he wonderful people at the Hemophilia program are truly my go-to group for most medical concerns…from a stubbed toe to a bloody nose to a total knee replacement.

In addition to patient care, BloodworksNW developed the first practical means of producing cryoprecipitate on a large scale in order to treat patients with hemophilia, allowing them to begin to live more normal lives with the hope of better longevity as well. For Steven, this meant he could do things like play outside and go to school.

During Steven’s 40 years with BloodworksNW, the Hemophilia Care Program staff has become like a second family to him. They have prepared plans for surgeries, assisted with insurance gaps and glitches (critical for an expensive condition like hemophilia), coordinated travel (including to meet the woman who’s been his wife for the past 17 years), and provided emotional support—all in addition to tending to his bleeding disorder itself.

Today, Steven leads a happy life with his wife and their Chihuahua — he’s grown far beyond that baby with foam taped to his knees.

When asked how his life would be different without BloodworksNW, Steven says:

Plainly speaking, I would be lost… Without the confidence that I have through my medication via the Hemophilia Program at the Puget Sound Blood Center I would literally be crippled, bleeding, in pain, scared, and hopeless. Without exaggeration, I owe everything to them and the medications, resources, and compassion they provide. To answer the question bluntly – My life would be different in that I wouldn’t have one.

The road continues for BloodworksNW’s research, too. Our scientists are pursuing better, more effective treatments.  Short-term, our goals include developing personalized care plans for people with bleeding disorders to help them live free of pain, disfigurement, and disability.  Long-term, we’re working for a cure.

You are a critical part of this work.  Your support can help patients like Steven live longer, healthier lives.

*not his real name.