Tue 17 Apr 2018
The Theme for World Haemophilia Day this year is ‘Sharing Knowledge Makes Us Stronger’ so we spoke with Shauna about sharing her lived experience with a bleeding disorder:
Tell us a little about your bleeding disorder
I have severe Type 3 von Willebrand disease. Essentially my blood doesn’t clot as it should, and because a deficiency of von Willebrand factor results in a deficiency of factor VIII (8) it looks a lot like haemophilia A. I experience joint bleeds, muscle bleeds, frequent nosebleeds, severe bruising and more. I treat my bleeding disorder with factor replacement twice weekly, or more in the instance of bleeding.
Can tell us about a time where sharing your experience has helped another person?
I’m an internet communications student so I am very active online amongst multiple social media platforms as I put my learnings into practice. I often share my experiences of living with a bleeding disorder online with goals of raising awareness through to encouraging others to donate blood. I recently had a stranger reach out to me after seeing my posts online, as they had just been referred to a haematologist after their GP had ordered blood tests that indicated she had von Willebrand disease. We talked through what she should expect when visiting her specialist, things she might want to ask to understand her diagnosis better, and some of my life experiences. She was very grateful for me talking things through with her and the pending diagnosis was no longer so daunting.
What tips would you give to other women with bleeding disorders?
Don’t be afraid to speak up for yourself in regards to finding the right treatment plan. Everyone has different bleeding symptoms, and everyone responds differently to different treatments. There is no one size fits all solution, and if you feel you have tried something and it is not working, there is no way to work through other solutions with your medical team if you don’t express this. Surround yourself with supportive people who understand what you’re going through. Finding what works for you can be a long road and sometimes having a sounding board for your frustrations makes all the difference in moving forward and seeking out other solutions, as opposed to accepting that something is normal for you and going untreated.
Anything else you would like to say?
Our community is small, but through sharing information with each other we are able to work together to develop better treatment plans and improve quality of life for everyone. Don’t be afraid to speak up, share your experiences, and ask questions when you’re unsure.