Chloe’s Life With the Von Willebrand Chronic Bleeding Disorder

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Women getting heamophlia treatment

I’m Chloe, I’m a Stylist & Art Director from Perth, Western Australia. As a female in a developed country and diagnosed with a bleeding disorder in my early 20’s, I recognise the significance that adequate treatment can make to quality of life. I believe everyone should have the right to this no matter what age, severity or ethnicity. Reading and advocating on a daily basis has become a natural part and big passion of my life.
Chloe's Life With the Von Willebrand Chronic Bleeding Disorder

Chloe's story

Although I am a female lately diagnosed and began using factor later in my life as opposed to most male patients, I still consider myself no different in the bleeding disorder community. I have realised there is little acceptance of female patients globally and eager to tackle this gender issue. There is no solid education materials, medical data research and documented evidence of bleeding symptoms in females which has made it even difficult to identify with my own bleeds at times and still does. It absolutely resulted in my late diagnosis and late treatment. I am well aware I am a small minority in my current position. A female with bleeding symptoms, diagnosed, educated and also receiving treatment.

 

Bleeding disorders affect both genders equally, female haemophiliacs exist too whether the medical systems and communities like to admit that or not. Severity or mildness of a diagnosis, I have no doubt that there are just as many female haemophiliacs as there are males. Since speaking to ABC and sharing my story globally I have heard from hundreds and thousands of women around the world desperately seeking help. So here it is again..

Her experience

My first introduction to bleeding disorders began with my own diagnosis, of course. From my earliest memories of being far more prone to bleeds, and prolonged bleeding that affected my attendance of schooling to having wisdom teeth removed and need blood transfusions, it was only until after 7 months of weekly iron infusions and still anaemic, did my haematologist look into testing me for Von Willebrand’s Disease when I explained my excessively heavy menstruation had lasted for 5 years straight, and whilst being on hormones. This was only the beginning of testing my limits.

 

I then began trialling more combinations of hormonal and new synthetic clotting therapies. I continued to battle using them with the addition of their negative side effects for my menorrhagia for another 7 years. It was most definitely the hardest battle of my life. Despite consulting with a Haemophilia treatment centre I had a hard time getting haematologists to recognise the severity of my blood loss and the impact it had on my everyday life. Although Menorrhagia was my biggest bleeding concern I have encountered all kinds of other bleeding with my body too.

 

When I decided to advocate for and educate myself, it was like taking up a new hobby. However, it allowed me to get creative and find alternative options to seek help for my health and wellbeing. I reached out to other women through MyGirlsBlood and other online groups where I gained the courage to do something about it and not keep waiting for a day doctors would suddenly somehow see me differently as a patient. It took some time to understand that my situation was not well understood even in a developed country but learnt that my position was still a rather privileged one on a global scale which inspired me to achieve my personal health goals so I can help others.

 

Recently my lifestyle changed forever. I travelled interstate to consult with a doctor of not only experience but most importantly has the understanding that not every bleeder is exactly the same. I requested to trial factor for years prior from other doctors but always denied because it was not known to treat menstruation which is what I was specifically hoping it would help me with. My blood loss and the pain that followed with it was debilitating and at times very dangerous and left me unconscious. What my friends and family have been through, has only shown me how loved I truly am.

Trialling factor

So I trialled factor with success, with no side effects either. I have been pain free from my bleeds for the first time in 14 years and feel like I found the something that works for me. What was a 5-year period is now 5 days, and it’s pain free. I’m incredibly grateful for this and to think I had to wait so long requesting doctors who constantly knocked me back because I’m a female, or there was no research or data to prove it works was going to be forever.

I found the right solution because I stood up and advocated for myself.

This is incredibly important when there is a lack of education and awareness, and in my case a lack of medical studies to guide medical specialists into considering other treatment options. I felt pressured into using drugs I didn’t want to in the past when they were suggested or prescribed but now realise it will always be my choice at the end of the day.

A doctor’s advice is to make recommendations when they consult not dictate your treatment plan. Society places a lot of expectations on doctors like super heroes and that they will completely cure or fix people of illness which is not the case. I took responsibility for my body and health, this has greatly increased my chances of success.

Nothing has been more liberating or satisfying than the journey of living with my bleeding disorder. My condition has taught me so much about myself and to appreciate the most basic experiences in every day. Learning about functioning as a woman from an endocrinological aspect has revealed I do not have one factor level throughout my life, but it changes throughout the month. It initially made my diagnosis difficult for 7 years but now I see it as such an advantage and have never felt more grateful for who I am. I’m really proud to be a woman, a bleeder and the courage of my community inspires me every single day.

I encourage all reading my story to share theirs, and save a life.

Chloe's Community Projects

Involvement & volunteer work in my community:
– Media Chair at Women’s Booth #42 (WFH 2016 World Congress) (this was the world’s first women’s)
– Australian Ambassador at MyGirlsBlood
– Creative Team at RightToLive Campaign

My Projects:
– Global Women Bleeder Standards Proposal
– Australian Women’s Bleeding Disorder Data Project

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