The eldest of five kids, all with various bleeding disorders, Julia was tested for von Willebrand disease (VWD) at age six. Although she suffered pain, bleeds, and bruising throughout her childhood and adolescence, because her factor levels were considered “borderline”, in her view her disease was not taken seriously or adequately addressed. “In my case, my diagnosis is based on the constellation of symptoms I experience, rather than blood work. My illness was never considered ‘serious enough’ to be treated. Living in this ‘gray area’ of a disease can make you feel angry, invisible, alone, and misunderstood. People – family and friends – often just don’t get it. Finding those who believe in you can make all the difference”.
Like many women with VWD, Julia experienced severe menstrual bleeding, miscarriages, and a traumatic experience with the birth of her first son.1 “I almost died from severe bleeding. The pain of delivery and postpartum fatigue and hemorrhaging were intense. I was not happy with my Stimate® treatment.* It was very frightening.” Factor therapy changed her birth experience with her second son dramatically. “The difference between the two deliveries had a profound impact on me. I want to help other women like me and improve upon the way high-risk pregnancies, especially for women with bleeding disorders, are handled.” Julia is also vigilant about the way her disease may affect her sons and makes decisions about their health care accordingly. “It’s a family affair.”
* Stimate® is a registered trademark of Ferring Pharmaceuticals.
Since the age of 16 and up until the time of her second pregnancy, Julia had managed her bleeds with Stimate. “It helped with my heavy periods, a severe foot injury, when I had my wisdom teeth removed, and with various other injuries. The spray is a relatively easy delivery system, but the preparation for it and aftermath of dosing can be tedious. You have to be really careful with hydration and urination – it’s a long process and no fun. Yes, Stimate would slow my bleeding, but looking back after switching to factor treatment, I realize I'm now in a better place.” When she was pregnant with her second son, two things happened. First, current batches of Stimate were taken off the market. “My doctor called and told me to throw my entire supply out.” Second, she met a doctor who really listened to her and believed in her experiences. “Finding my doctor was like finding a magical unicorn. She saved my life. It can be very frustrating when health care providers don’t fully appreciate how a bleeding disorder impacts your life or when they do not understand you and your personal situation. Finding the right doctor is essential.”
With the help of her new doctor, Julia transitioned from Stimate to wilate®, supplemented with Amicar®*. “I never even knew factor products existed. I was anxious and fearful about shifting to a factor product and self-infusing. But my doctor was there for me, with instruction and practice kits, plus lot of patience and compassion. It really helped me.” Julia has found that her new regimen does a good job for her. She has adjusted to storing and mixing her wilate, developed a system for infusing safely at home, and she no longer fears needles. She finds that for her, the upsides of factor therapy far outweigh any concerns she had about infusing or handling the medication. “With factor combined with Amicar bleeds resolve so quickly. My periods are completely different – just a normal flow. My whole body feels different – in fact, I feel like Superwoman after infusing. My body just doesn’t have to work as hard. Once I switched to factor, I couldn't ever go back to life without it.”
* Amicar® is a registered trademark of Clover Pharmaceuticals Corp.
Despite her family history, for most of her life Julia knew absolutely nothing about bleeding disorders. She didn’t know anyone outside of her siblings with the condition. She didn’t understand normal bleeding, had no idea what normal menstruation looked like, and certainly did not know that the risks associated with pregnancy and childbirth for women with bleeding disorders could be addressed. “That’s all changed now. I am connecting with other people with bleeding disorders and VWD, and I am learning so much. Factor My Way has been a fantastic resource for understanding VWD and getting tips for how to live with it.”
With factor therapy, Julia’s second delivery was a completely different experience from her first and has made her hopeful about adding more kids to her family down the road. And it has made her a “factor fan” and advocate. “I want to help others learn more about their bleeding disorders and share my experience as a wife, mother of two boys, and woman living with VWD. That’s why I am so active on social media – I want to get the word out.” #superwoman
When thinking about advice for others like herself, Julia has some heartfelt recommendations:
1. “Conception, pregnancy, and childbirth with von Willebrand disease”, Canadian Hemophilia Society, https://www.hemophilia.ca/conception-pregnancy-and-childbirth-with-von-willebrand-disease/ (accessed 15 November 2021)
This material represents individual patient and/or caregiver experience living with a bleeding disorder.
This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Please consult with your local Hemophilia Treatment Center physician or other health care provider if you have any questions related to management of bleeding disorders.
Este material representa la experiencia individual de un paciente o cuidador que vive con un trastorno hemorrágico
Este contenido no tiene como objetivo reemplazar el consejo, diagnóstico o tratamiento médico profesional. Consulte con el médico de su Centro de Tratamiento para la Hemofilia local u otro proveedor de atención médica si tiene preguntas relacionadas con el manejo de los trastornos hemorrágicos.