Keywords
Annual report
Diseases & therapies
Haematology
von Willebrand disease
My life with VWD: Making a difference
07/09/2020
Patient stories
Growing up with VWD
Patients with type III VWD can have severe spontaneous bleeding episodes, often in their joints and muscles.Women are at particularly high risk of bleeding during pregnancy and childbirth, with some studies showing a ten-fold increase in maternal mortality rate for mothers with VWD.
Kerri is a friendly, easy-going and caring nurse at Lucile Packard Children’s Hospital in Palo Alto, California, USA. Six months after she was born, Kerri was diagnosed with Von Willebrand Disease, a genetic blood clotting disorder that affects about 1% of all people.
Every parent’s worst nightmare
Kerri was a sweet and energetic baby. “I remember how Kerri just loved being held while being bounced on my knee. Immediately, as I took her into my arms, she would give me that cute smile,” says her mother.
However, when Kerri was six months old, her mother noticed bruising around her chest and soon realised it was from sitting in her highchair. The next day, both parents took little Kerri to her paediatrician and what should have been a regular check-up escalated into every parent’s worst nightmare. Kerri was referred to a haematologist at the Children’s Hospital of Philadelphia and, after a genetic workup, the little baby girl was diagnosed with VWD type III, the rarest and most severe form of the disease.
Now, almost 27 years later, Kerri is thankful to her parents for advocating for her at such a young age. As she puts it: “I realise that not everyone’s story is the same and often times getting an accurate diagnosis is very difficult. Thank you Mum and Dad. I love you!”
Growing up feeling distressed
For Kerri, growing up with VWD was not easy. When she was a teenager her greatest challenge, as it still is, was her heavy ongoing menstrual and breakthrough bleeding. “This was the hardest thing to initially treat and manage and also the hardest to talk about and explain to other people,” describes the young woman.
As a teenager, she felt distressed, missed weeks of school, stopped playing sports and felt truly exhausted. Her heavy periods occurred too frequently and lasted too long. If it had not been for her loving parents and sisters, it could have been even harder. As she remembers: “Growing up with sisters – Bridget and Molly – was the best. I always had someone around and feel grateful to have them in my life.”
Now this caring nurse does everything to support and empower others with VWD. “I know how hard this disease is, from the physical aspects to talking about it with your doctor, family and even in an intimate setting with your partner,” says Kerri.
Patients with type III VWD can have severe symptoms, including spontaneous bleeding episodes, often in their joints and muscles. Women with VWD are at particularly high risk of bleeding during pregnancy and childbirth, with some studies showing a ten-fold increase in maternal mortality rate for mothers with VWD.
Learning to adapt
Over the years, Kerri tried pretty much every form of birth control and other treatments to help control her VWD symptoms. For a little over a year now, she has been treated with Octapharma's von Willebrand/coagulation factor VIII concentrate. Kerri learned how to infuse the medicine herself. “I infuse based on my activities, how I am feeling and if I have any active bleeding going on,” says Kerri. “I love to hike and run, so usually after those activities my knees can become aggravated so I will infuse afterwards, but I don’t keep to a strict schedule and that is what works best for me.”
She admits there are some limitations but she has learned to adapt. Having this condition does not need to get in the way of anyone’s life. “Almost a year ago, I moved from Pennsylvania to California! I wanted to experience living out west and it has been the best decision I have made so far,” the young lover of Californian sunsets and singer of Maggie Rogers’ music enthuses. “I have met so many great people and experienced new things every day. It has really taken me out of my comfort zone and changed me for the better!”
A passion for work
Due to her bleeding disorder, Kerri has dealt with a lot of medical professionals. “It’s what inspired me to become a healthcare professional myself,” says Kerri. “What I loved most about my experiences were the nurses. I always felt they supported me, listened to me and made me feel less anxious. These remarkable nurses motivated me to become like them and I wanted to give that same positive experience back to other people.”
And her experience has helped create a lot of understanding and connection. “I now have a tremendous amount of empathy for patients. I have told several patients about my condition. I think it helps them to see that their nurse understands a little.”
Octapharma is committed to improving the awareness of bleeding disorders, which in turn helps more and more patients like Kerri, through initiatives like supporting vwdtest.com or sponsoring educational workshops on the diagnosis of VWD.
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