Take one day at a time and live

10/29/2020
Patient stories

Andrew is a caring teenager who already knows how to capture an audience’s attention. In one of his opening speeches as a counsellor at a summer camp for kids with bleeding disorders last year, he told a story about his favourite book character, Ponyboy Curtis, from S. E. Hinton’s The Outsiders.

“Ponyboy is intelligent, empathetic and brave. But he is also bullied because of how he grew up,” he told them, adding: “Talking to friends about your bleeding disorder may make you nervous, but there are some things you can do to make it easier. You might sometimes feel that having a bleeding disorder makes you not “normal,” but everyone has something they have to deal with. Don’t forget that nobody is perfect.”

“That’s so typical of Andrew,” says his proud father, Tony. “He’s such a caring boy and he can connect to these kids so well. He knows exactly what they're going through, as Andrew himself was diagnosed with a bleeding disorder, Von Willebrand disease.”

Please don’t take my boys

Andrew had health issues from the day he was born. However, no one knew exactly what was wrong. “We went through a lot of testing, but nothing came out,” explains Debra, Andrew’s mother. “Obviously: because the wrong tests were being done.”

Things became really difficult when Andrew was 2 years old. Misunderstanding the marks and bruises that sometimes appeared on his body, his nursery day care centre accused his parents of child abuse. The days and months that followed were a barrage of tests, questions and anxiety. “I felt terrified and lost,” remembers Debra, wiping away a tear running down her cheek, adding: “One day, a white van showed up at our house and I thought they’d come to take my boys away from me.”

After a year filled with more tests and no answers, a new doctor suggested a complete blood test. Once the results came back, Debra and Tony were told their son had type 2A Severe Von Willebrand disease (VWD).

The family felt overwhelmed. Completely exhausted, they tried hard to process this devastating news. But, as Tony explains, new questions started to surface: How? What does it mean? How is this possible when no one in the family has it? How do we protect our son?

Living with VWD

Once everything settled down, Andrew’s parents started looking into different types of support groups to find answers and to figure out their next move. They learned that VWD, often underdiagnosed, is believed to affect 1% of the world population but the prevalence of those who have symptoms and need treatment is about 1 in 5,000.

VWD is usually inherited and affects both males and females equally. It is a very complex disease, with three main types and a number of subtypes. These all differ in the way the disease in inherited, its severity and type of bleeding, and other molecular features.

“Yeah, VWD is scary, but with the help of family, friends, doctors and support groups you can learn, grow and accomplish anything in life,” Andrew explains, adding: “If you have questions and concerns you must ask someone: that’s the only way you can improve the way you live.”

It’s teamwork

Now nineteen, Andrew is thankful to his parents for advocating for him at such a young age. “My mum and dad are tough,” he says, adding with a smile: “In a good way. They are always watching out for us to ensure we stay safe and healthy. My older brother, Anthony, he is always there for me no matter how much I bug him. Grace is my younger sister; she makes me laugh no matter how upset I am. We are a real team!”

They also work as a team when they help Andrew with his infusions. While he packs for school in the morning during the week, his dad mixes Octapharma's von Willebrand/coagulation factor VIII concentrate. This VWD/Coagulation Factor VIII concentrate is presented as a powder and solvent for injections. “On the weekends, it is my job to infuse by myself,” explains Andrew. “But mum and dad are always on standby in case I need help finding my veins. I have veins that like to hide from time to time,” he jokes.

Fully enjoying life

Andrew started using Octapharma's von Willebrand/coagulation factor VIII concentrate about 6 years ago. He says.

“I can go zip-lining down a mountain going over waterfalls and canyons, or go white-water rafting. Just fully enjoy my life with my cool family. As mum and dad would say: “Take one day at a time and live. And I believe that is all we can do, take one day at a time and live,” concludes Andrew with a smile.

Octapharma is committed to improving awareness of bleeding disorders, which in turn helps more patients like Andrew, through support of a number of different initiatives. One of these, the website vwdtest.com, offers information about this bleeding disorder, together with insights from world-class experts and from VWD patients themselves.

Additional resources

Bleeding assessment

Bleeding disorders can cause abnormal bleeding both inside and outside the body. When is bleeding abnormal? The VWDtest.com online bleeding assessment tool can be used to detect if a bleeding disorder may be present.

Take the test
Keywords

Diseases & therapies

Hematology

von Willebrand disease