Mysterious Bruising
When Kerri was five or six months old, her mother noticed bruising on her chest – just about at the height of the tray on her highchair. Thinking that this was odd, and feeling concerned, she took Kerri to the pediatrician. After further testing, Kerri was diagnosed a few months later with Type 3 von Willebrand Disease, the most severe, and the rarest form of the bleeding disorder. Although Kerri's family was unaware of any genetic history with the disease, it turned out that her parents are both carriers, as are her sisters, although everyone but Kerri is asymptomatic. “I was very fortunate to be diagnosed so early. That is not everyone's experience.” Many times, women are not diagnosed with von Willebrand Disease until they reach the age of puberty, or even until childbirth. “I became a nurse because of my own medical history and because I wanted to provide the same compassionate care I received growing up from my nurses to other people. I am very interested in women's health, especially around pregnancy and childbearing. I love taking care of the mom and baby.”
Rare and Little Known
The diagnosis of von Willebrand disease was surprising for Kerri's parents and caused them considerable stress. “My parents were worried all the time. They were definitely helicopter parents and very protective of me. I wore a helmet and kneepads, and sometimes elbow pads, growing up. I never went to day care. It was definitely difficult for them. As I've grown up, I've become my own caregiver. But to this day, my mom still worries about me.” As a child, and into adulthood, Kerri was treated by several hematologists. Despite their area of specialization, most of them had only seen one or two patients with Type 3 VWD and consequently were learning how to best treat the illness alongside Kerri and her family. “I've had good experiences with all my doctors, but I have definitely had to work harder to communicate what was going on with me and to advocate for the care I needed.” When Kerri began menstruating in the 9th grade she had tremendous difficulties with bleeding. It took six months and use of a lot of factor to get it under control. She tried several different birth control pills to control her flow. “My body would just get used to the pill I was on, and eventually the bleeding would become problematic again. It might have been helpful if my hematologist had referred me to a gynecologist once I got my period, but it just didn't happen.”
Finding Her Tribe and wilate®
Until discovering Octapharma and wilate, Kerri had never met any other people with Type 3 VWD. “I went to the VWD Connect Conference supported by Octapharma, which is designed specifically for Type 3 patients. It really opened my eyes and inspired me to get more involved with the Type 3 community. For the first time I met people with experiences similar to mine and learned so much from them about how they were being treated and what they were doing to manage the disease. That's where I learned more about wilate, which I had been interested in a few years earlier. I was intrigued by its 1:1 ratio of VWF and FVIII as well as its lower dosing requirements.” Throughout her childhood, Kerri had mostly been prescribed Humate–P, and sometimes Alphanate®. Her bleeding was treated as needed (on–demand) for joint bleeds, nosebleeds, and sports injuries. With adolescence and adulthood, Kerri experienced heavy and prolonged menstrual bleeding, very common in women with VWD, and was treated more frequently and with higher doses to manage her symptoms. “I was looking for something different – something that would better manage my bleeding and joint pain, but not require huge doses.” The first doctor from whom Kerri requested wilate declined to change her prescription. On her second attempt with a new hematologist she finally got her way. “Doctors can be reluctant to move you off a medication that they think is working, especially if the drug you want to try is a relatively new one.” Kerri has been on wilate since 2019, self–infusing at home or work. “I treat myself when I need it and can manage any bleeds very effectively. I am very active – I like to run, hike and swim in the ocean, and joint and muscle pain make that harder. My knees, in particular, can get stiff and achy. On wilate my whole body feels different. I am able to do the things I enjoy with much less pain and I definitely feel better after strenuous workouts. Wilate works really well for me.” Kerri infuses on demand whenever she feels she needs it. And she stays very active in the bleeding disorders community, both in online forums as well as in–person events. “There's nothing like meeting fellow VWD patients in person. That's why I became a Factor My Way Patient Educator. It gives me a whole new way to connect and share information. I love it.”
Sticking Point
“Lots of people with bleeding disorders are reluctant to self–infuse. I learned to self–infuse in high school, but I was uncomfortable doing it on my own. Sticks can be intimidating.” Now that she is a nurse, Kerri finds self–infusion much easier, and is comfortable and proficient doing it completely on her own. Prior to self–infusion, when she had a bleed she had to go to a clinical setting or have a nurse come to her home for infusions. “It took up a lot of time. Self–infusing is much more convenient and makes it easier to stay compliant. Plus, it makes traveling so much easier. I talk to patients about why they are uncomfortable and try to help get them over their fears. You get a great sense of independence if you can do infusions yourself. It gives you control and peace of mind. That's transformative.”
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