Live Your Story

Imagine sitting in a doctor’s office as a young teenager with a world of possibilities at your fingertips and being told that from that point forward you were to stop doing everything you love. After being diagnosed with Von Willebrand Disease, this was the devastating truth for 12-year-old Brandee Cookston. Her world, which was once bustling with exciting opportunities and the promise of fun-filled teenage years, suddenly caved in.

Brandee had been diagnosed with Von Willebrand Disease (VWD) type 3 which is an inherited blood clotting disorder that slows or prevents the body’s ability to stop bleeding. It is often caused by either the complete absence or deficiency of an essential protein involved in clotting, the von Willebrand factor, and results in extremely heavy bleeding after an injury or general issues with clotting.

Brandee’s first indications of this inherited disorder began with her first menstruation, manifesting in one of a female’s worst fears: a cycle that never seemed to stop. After experiencing this nightmarish introduction to womanhood, she was soon taken to a hematologist where she learned of her diagnosis and was told to stop all activities that could lead to potential injury- a devastating sentence for an active teenager who loved youth camps, sports, and being with friends. Looking on as her friends enjoyed the luxuries of a reckless youth, Brandee suddenly felt like a porcelain doll locked away to keep from cracking.

Luckily, with the help of her hematologist, she was connected with a group of kids dealing with similar diagnoses and her world opened up again. She was taken bowling and white water rafting, regaining a sense of her stolen adolescence. However, despite being on medication for her clotting disorder, she was still afflicted by painful symptoms of VWD, sometimes not being able to walk three feet without passing out and having to routinely receive blood. Ultimately, her symptoms got so severe that she was forced to leave school, finding the task of simply getting out of the house to be a laborious effort.

In her early twenties, she decided to get a hysterectomy to be free of these debilitating symptoms. However, after opening up to her gynecologist concerning this monumental decision, she was met with doubt and pushback. The OBGYN was hesitant to meet Brandee’s request, lamenting that she would regret her decision and wish to have children later in life. Having received this response from a healthcare professional meant to support and guide her to make informed health decisions, Brandee was left both enraged and disheartened; her faith in healthcare providers shaken. This interaction unfortunately only marked the beginning of a string of disappointing interactions with healthcare providers.

After receiving this hysterectomy, with a different provider that is, Brandee felt she had regained control of her life. Her frequent bouts of cramping, bleeding, and fainting spells had finally vanquished from her days. Her world began to brighten. She started connecting with other individuals with blood disorders, enjoying trips all over the US where she was able to meet with clinicians, enjoy the company of people with similar life journeys, and bond over her condition. She now looks forward to these conferences every year, rekindling with old friends and sharing stories.

However, despite the strides Brandee has made towards making the most of her life outside of her condition, throughout her disease journey she finds a lack of support from healthcare professionals to be a common theme. Since her original diagnosis, she has continually struggled to find information regarding her condition, often put on wait lists for many months to years at a time. In the instances when she finally met with specialists, her experiences fell across the board, ranging from blatantly dismissive interactions to others where she was simply met with “I don’t know’s.” One particularly frustrating dead-end led her on a 10-hour round-trip drive to meet with a geneticist who dismissed her after a lengthy five-minute appointment, explaining that they could not interpret her results without a doctor’s input. She also experienced no shortage of interactions where she was completely disregarded, meeting with doctors who dismissed her symptoms entirely. Having felt her faith in healthcare rocked to its core, it is no wonder that Brandee replied that her ideal healthcare professional would simply be someone able to explain her condition to her.

Despite the frustrating journey Brandee has endured to seek out information about her condition, she remains optimistic with a hopeful outlook in life. While she admits she still grapples with the loss of her youth to this disorder, she carries herself with an unmistakable zeal for life, captured perfectly in her quote, “If it’s something you want to do and if it’s worth the risk then DO IT!” Currently, she works to spread this optimism as an involved member of many bleeding disorder communities, advocating for fellow individuals affected by bleeding conditions and organizing events within these communities. From her general energy to the amazing contributions she has made to the bleeding disorder community, Brandee echoes the phrase mounted on her office wall… “Live your story.”