Haemophilia Foundation
Australia
Skip to content
Normal contrast
High contrast
MENU
Search for:
Login
donate
Today
Home
About Us
Who We Are
What We Do
Our Council
Meet the Staff
Our Supporters
Contact Us
About Bleeding Disorders
Fast Facts
FAQs
View All FAQs
Haemophilia
Newly diagnosed
Von Willebrand Disease
Women with Bleeding Disorders
The Female Factors
Haemophilia and carrying the gene
VWD in females
Other women's resources
Other Bleeding Disorders
Factor I Deficiency
Factor II Deficiency
Factor V Deficiency
Combined Factor V and Factor VIII Deficiency
Factor VII Deficiency
Factor X Deficiency
Factor XI Deficiency
Factor XIII Deficiency
Inherited platelet disorders
Gene therapy
Hepatitis C
HFA hepatitis C strategy
Double Whammy Report
Getting It Right evaluation
Hep C Resources
Hep C Treatments
Telling others about hep C
World Hepatitis Day 2020
HIV
HIV and Bleeding Disorders
Living with HIV
Travel
Disclosure
ABDR
MyABDR
What is MyABDR
Why use MyABDR?
MyABDR Updates
Privacy Consent
Background
Have Your Say
MyABDR Feedback
Safety and Supply
Personal Stories
Newly Diagnosed
Parents and Families
Ben – a father’s perspective
Mindi Palm - Living like a Swede
Growing up with a bleeding disorder
Youth
Tim - young person with haemophilia
Alan - telling others
Shauna - sharing her life experience living with a bleeding disorder
Women
Sharron - A woman with haemophilia, carrier, mother of a son with haemophilia, dad has haemophilia
Living with haemophilia
Living with VWD
Susie – living with type 1 von Willebrand disorder
Shauna Adams – managing type 3 VWD
Connection & Peer Support
Connecting to others
Overcoming Challenges
Sharing Knowledge
Family & Community Camps
Getting Older
Mike - older person with haemophilia
Hepatitis C
Anth's treatment story 2018
Simon's treatment story 2017
Len's treatment story 2017
Paul's treatment story 2017
David's treatment story 2016
Share your story
Support & Services
State & Territory Foundations
Treatment Services
Getting Older Info Hub
Health & Wellbeing
Exercise, arthritis and balance
Bleeding problems
Pain
Mental wellbeing
Working with your health care providers
Services For Getting Older
Work & Finances
Concession cards
Support
Recreation & Travel
Planning For The Future
Connect To Others
For Health Professionals
International Haemophilia Links
Other Links
Youth
Youth Program
Factored In - youth website
Understanding Youth Needs
Youth News
Kids
Colouring in fun!
Livewire
Health Professional Groups
Publications
Bleeding Disorders
Haemophilia
Newly Diagnosed
Haemophilia Resources
Mild Haemophilia
Living with Mild Haemophilia
Sport
Gene therapy
Von Willebrand Disease
Women with Bleeding Disorders
Young women
Telling others
Hepatitis C
Hep C Fact Sheets
Personal Stories
Reports
For health professionals
Getting older
Getting Older Info Hub
Reports
Getting Older full report
For health professionals
Young People
National Haemophilia Journal
Nursing
Annual Reports
Promotional Resources
Awareness Newsletters
News
Research
Research Fund
Research Fund Grants
PROBE study
Getting Older Project
Participating in Research
Clinical Research
Social Research
Market Research
Questions to Ask
Complaints
Conferences
2019 Conference
Abstracts & Presentations
Program
Sponsors
Registration
Conference Venue
Youth
Travel & Parking
Other Information
Organisers
2017 Conference
Abstracts & Presentations
Sponsors
Program
2015 Conference
Abstracts and Presentations
2011 Conference
Abstracts and Presentations
2009 Conference
Abstracts and Presentations
2007 Conference
Get Involved
Donate
Donate Now
Ways to Give
A Reason to Give
Give Monthly
A Gift in your Will
Give in Celebration
Give in Memory
Fundraise for Us
Events
Bleeding Disorders Awareness Week
Go Red for Bleeding Disorders
Resources & Fun Activities
Attend one of our events in person or virtually
Baking Red Cupcakes
One Community, Many Faces: Our Stories
Ben – a father’s perspective
Tim - young person with haemophilia
Sharron - A woman with haemophilia, carrier, mother of a son with haemophilia, dad has haemophilia
Susie – living with type 1 von Willebrand disorder
Shauna Adams – managing type 3 VWD
Mike - older person with haemophilia
Share your story
Donate to support our community
Red Cake Day
World Haemophilia Day 2020
I have story to tell you...
Organise Your Own Event
Fundraise for Us
Event Listing
Past Events
Awards
DCMEF
Go For It Grants
Go for it Grants 2018
Shauna Adams – managing type 3 VWD
Was this page helpful?
This is a transcript of Shauna’s presentation at the 2019 Australian Conference.
Hi everyone, thank you all for joining me today. I’m here to tell you a little about my experiences growing up as a severe bleeder and the challenges I have faced along the way.
As a baby learning to walk, I was progressively becoming covered in bruises with no known reason why. After I fell and cut my lip, the bleeding continued until I was taken to hospital via ambulance where I was diagnosed with type 3 von Willebrand disease. With no known family history of this condition, my parents carefully navigated through my upbringing, figuring things out along the way under the guidance of my haematology team.
GROWING UP
Growing up with von Willebrand’s I’ve seen a great deal of change to my treatment plans over the years. My symptoms evolve as I age, and I have also experienced changes in my lifestyle that have required a different level of care. Keeping record of my changing symptoms helped establish new care plans, including updating contraceptive methods to manage bleeding, through to moving away from on demand treatment to a prophylactic routine to prevent ongoing joint damage.
As a child, my main causes for concern were nosebleeds, general knocks about, and weirdly enough, losing teeth. Much to the detriment of my parent’s stress levels, though to my gain, they still allowed me to try out a great deal of activities, within reason. Contact sports were out of the question, but I dabbled in athletics, running and swimming until eventually finding a love for ballet, which kept me active and strong well into my early 20s. My parents were involved in educating my teachers on my bleeding disorder and ensuring I could also advocate for myself in an emergency if needed. Treating my bleeding disorder as an open topic for conversation has ensured those around me were aware of what help I may need.
Entering my teenage years saw huge changes in my bleeding concerns, facing heavy periods and haemorrhaging ovarian cysts. Fortunately, my HTC being based in the women’s and children’s hospital meant I had access to a great women’s health team that could work closely in collaboration with my HTC. Once we found the right solution for me, I was able to get back on top of things and continue living a relatively normal life, as much as any teenager could say so! People often ask if this was difficult mentally, as most young women aren’t thrilled about discussing the topic of their hormonal activity, especially with their parents. I consider myself lucky in some ways that this was my ‘normal’, because it meant there weren’t any delays in seeking the right treatment. I also owe a great deal of thanks in that respect to my parents, who always faced the topic in an almost professional manner so that I never felt uncomfortable.
CHANGING TREATMENT PLANS
Due to a combination of the low frequency of my serious bleeding episodes as well as my families own personal choices, I grew up receiving factor on demand up until the age of 24. I had a relatively severe joint bleed in my left knee that reoccurred twice over the space of 6 months, and on investigation it was found that I had already started to develop osteoarthritis, probably from minor bleeds that went untreated over time in addition to the acute bleeding. Due to the restrictions this was already placing on my mobility I decided, with the advice of my HTC, that it was time to start a prophylactic routine to prevent any further damage to the joint.
While it is difficult to say how things might have been had I started prophylaxis earlier, I am in some ways glad that my treatment plan panned out that way. As I began treatment on my own terms, I see that this has helped with my compliance, there’s no reason to rebel against the routine. It also means that I can more easily identify what is bleeding related or just a regular injury, because I can compare scenarios and how they felt without factor.
DEALING WITH CHALLENGES
In the same fashion as most of the bleeders we know, my life journey has been very unique, with treatment plans and self-management changing over time to suit my lifestyle. There is no one size fits all; however, there have been some key points in my life that have prepared me to take on most challenges.
Education: Ensuring I can learn as much as possible about my bleeding disorder in order to advocate for myself if needed. Having the confidence to ask questions and knowing where to find the answers.
Communication: being open about my bleeding disorder has helped this be a normal part of my life for me and also those around me. No bleeding topic has ever been taboo and should always be considered.
Keeping active and trying new things to find what works for me. Having the freedom to take these challenges on has helped me into adulthood and developed my confidence in all areas of life.
Overall, there are always so many exciting new advances in medicine and I know that as my journey continues to change as I get older there will be so many opportunities for me to take on whatever challenges I face head on, with a positive attitude and hope for a great future.