Stories

Jade’s personal story

Tue 16 Oct 2018

Jade has Type 1 von Willebrand disease (VWD). As a young woman, she understands the issues many other young women are going through as they begin to navigate the health care system and make more decisions relating to their own health and wellbeing.

The medical knowledge about bleeding disorders in females is growing all the time. Jade’s experiences have taught her how important it is to listen to her body and advocate for herself.

Diagnosed at only seven years old, Jade has experienced several different types of treatment throughout her life to control her bleeds. Now as a young adult, Jade encourages young women to be active in their health care as they begin to take control of their own health and wellbeing. An important step for Jade was to learn more about her VWD so that she can have an informed discussion with the health professionals in her treatment team.

“As a young adult now I do my own research to make sure I educate myself on everything I need to know before making a decision.”

Jade also encourages young women to find what works for them and their lifestyle.

 “I worked hard to find what works for me and now enjoy a balance of intense interval training, Pilates, jogging and hiking.”

Jade has also found that being vigilant and listening to her body’s signals has helped her create positive changes in her life.

“I started tracking and keeping record of not only my bleeds and bruises but my activity, joint pain and even diet. It was only through recording this and paying significant attention to my lifestyle that I realised patterns in both my menstrual cycle and lifestyle habits. Although this is a long process it is something I recommend for anyone wanting to understand their body better to make positive changes.”

Jade’s tips for other young women:

  • Listen to your body
  • A diary to record your treatment, bleeds and lifestyle including exercise might help you learn more about your body and related patterns
  • Being active in your care and speaking up for yourself when you need to is key to your wellbeing “because you deserve to live your life and have the ability to love every moment!”
     

“If I have learnt anything it’s that there are pros and cons for everything and only you can decide what works best in your lifestyle.”

Jade encourages all young women not to forget the importance of speaking to other women in the same situation as you.

“Don’t forget there is a huge group of women rallying behind you so reach out and speak to others in similar situations.”

More information

Contact details of Haemophilia Treatment Centres in Australia are available on the HFA website. 

For more information on bleeding disorders in young women read our full Female Factors resource.

Download Jade’s story here


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