Discover stories about how bleeding disorders have affected people and their loved ones.
With a little bit of luck…..
In 1979, and at the age of 2 weeks, one of my fingernails bled. The pediatrician asked my parents to put pressure on it using bandages. It never stopped. A few weeks later, I suffered an intracranial bleed which led to experimental surgery. During that time, the Hemophilia Treatment Center team (from the Puget Sound Blood Center now called Bloodworks), working with others, discovered that I was born with a severe and rare congenital bleeding disorder called factor V deficiency. No one else in my family had a bleeding disorder, so it was considered to be a mutation. They used FFP during my surgery and afterwards which helped my blood to clot. From that time on, my life unfolded into a series of unintended consequences and complications sometimes referred to as comorbidities.
The experimental surgery included removal of brain tissue causing seizure disorder and neurological deficits. I have developmental delays and a weakness of the entire left side of my body. I experienced grand mal seizures a few years ago. This meant it was time to change seizure medications as they were no longer effective. The trial-and-error to find the right medication was a complicated process because the seizure medications I needed to take caused bleeding. Now with an ongoing possibility of serious bleeding, I am infused with FFP prophylactically twice each week.
I want to thank the many volunteer blood donors who donate their time and FFP. I am so grateful.
I am now 37 years old and hoping to be lucky enough to have a company create a factor concentrate for those who have factor V deficiency. I want to be able to safely travel to Italy, to see where my parents were born.