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SILENT WARRIOR

TRANSFORMATION

Foreword by Dr Andrew Shelling

Copyright © by Paula Johnson 2023

It’s a great privilege to write the Foreword for Paula’s memoir, which is a remarkable story of her life and her personal experiences of going through premature menopause. Through her personal story, she sheds light on the often overlooked reality of premature menopause, a condition that affects an estimated 1 in 100 women under the age of 40.

     This memoir shows the diagnosis of premature menopause has impacted Paula’s life, but it hasn’t defined her, and this is a real example of someone ‘navigating life with courage.’ I must confess to thinking I would quickly skim over the pages of personal detail and just check up on the medical facts and details, and quickly write something thoughtful and academic. However, I was quickly drawn into Paula’s remarkable life story, which is so beautifully written and crafted, opening up her life for all to read. I ended up reading every word and enjoyed finding out so much about her fascinating life. I cried a few more times than I would like to admit, as she shared the twists and turns of her life adventures, that included heartbreak, success, excitement, and enlightenment. She really is an inspirational woman.

 

Premature menopause, also known as premature ovarian failure and premature/primary ovarian insufficiency, can be a devastating diagnosis for any woman. By definition, it is where periods stop (menopause) before the age of 40 and can potentially have a significant impact on fertility and the long-term health and well-being of women. It never used to be so much of a problem, as women began their families earlier a few decades ago. Premature menopause probably wasn’t talked about much in previous generations, the same way as reproductive events like puberty, periods, and menopause still aren’t openly discussed. Premature menopause often went undiagnosed and misunderstood, and it definitely wasn’t treated with the attention it deserved.

     I first started to research premature menopause about 25 years ago, which seems like a lifetime ago, after being introduced to a young woman with a strong family history of early menopause. I had previously been involved in studies where cancer ran in families. We have been able to make significant improvements in people’s lives by finding causal genes for cancer and identifying those in families that are at increased risk. We have been able to make dramatic improvements in outcomes in those cancer families by early detection, leading to increased awareness and screening, and often targeted treatments. To be introduced to a family with premature menopause was an opportunity to try and make a similar difference.

     My early research showed that there was little known about the condition and limited information was being given to women who had just received the devastating news. In the days before the internet, women were often left to their own devices to try and navigate the implications of the diagnosis alone, often without a lot of support from their own health professionals, partners, and friends, or being in a society where perhaps women’s reproductive health wasn’t seen as being very important, or not often talked about.

     I began a research project looking at the genetics of premature menopause, asking for women around New Zealand to donate some blood so that I could look at some candidate genes that might explain why it ran in families, and might also be of value for those who didn’t have a family history. I sent out invitations for women to join the research project, and some basic information sheets put in GP clinics around New Zealand. I was surprised that I soon began to get regular phone calls from women around New Zealand who wanted to participate in my research study, but more importantly wanted to know more about their condition. They often said they had limited information (other than what I had provided) and felt vulnerable to alternative opinions and therapies. I had so many conversations where women were just relieved to hear that they ‘weren’t a freak’, that it was relatively common, that there were other women around with premature menopause, and there were some possible treatments that might improve their quality of life.

     I started to write a more detailed information sheet based on current medical information and evidence. I also started asking if women would like to share email addresses, which led to some of them meeting and having life changing discussions.

     I knew that the best way forward was to set up some sort of support group. I can truly say that setting up the premature menopause support group, now called the New Zealand Early Menopause Support Group (www.earlymenopause.org.nz) has been one of the most significant things that have come out of my 30-year academic career. I know that it has had a significant positive impact on many women around New Zealand. In one of the first face to face meetings we had at the University of Auckland, one woman burst into tears and said if she had had a support group like this when she was first diagnosed many years earlier, she would have been a different woman today. Those words have stuck with me for over 25 years. The support group grew, as emailing became more common and websites became possible. We aligned ourselves a lot with the sensible and helpful Daisy Network (www.daisynetwork.org) based in the UK.  It was also important that the group be led by a woman with premature menopause, and we have had many years of amazing contributions by a series of dedicated leaders. It is amazing to realise that enthusiastic people with kind hearts can have so much impact on those around them.

 

Now to Paula. I have to say that she was a vital part of the early stages of setting up the support group and was inspirational in coordinating and organising some of the early meetings. Prior to the meeting in Taupo in 2004, she sent an email that sums up her positive mindset: ‘Remember this weekend is for US so it's important to make sure we get the most out of the weekend, and, most importantly what's most crucial for YOU. We are all at different stages along this path, but each stage is just as important as any other. My wish is that we all go away more educated, aware, and inspired to make a difference to our own lives as well as others. But I feel the most important is that we strive for acceptance and peace within ourselves with this POF condition.’

     I also found Paula a little unsettling. I was an earnest young medical researcher who wanted to stick to the evidence, but Paula liked to challenge the traditional medical system, ask lots of important questions (that often didn’t have an answer), and look for other possible treatments and options. Her inquisitive mind triggered off lots of hours of thought and investigation and helped to shape some of my future thinking and writing on the topic. There were some interesting discussions with Paula and the group, of the impact of premature menopause and bone health and finding the best treatments (which she describes in this book).

     I can also remember Paula asking me about the role of stress on premature menopause. At the time I had no idea what she was referring to and I probably didn’t have a very good answer. However, to be fair we still don’t really know the impact of stress on premature menopause, but we do recognise that it does play a role. Perhaps with time we will better understand the mechanisms involved. After reading her book I now have a much better understanding of the stresses in her life at the time and where she was coming from.

 

Paula’s story is an important contribution to the conversation surrounding women's health and overall reproductive well-being. As a medical researcher I’ve had a lot of patient samples arrive at my laboratory desk with a name on it, or more likely, a number. It is important for researchers like me to remember that behind every DNA sample, lies a beating heart, a family, and someone with a unique life story.

     Paula’s story helps to shed light on the impact of premature menopause, a topic that is not widely known, or even talked about. Other women going through similar experiences will benefit from hearing of Paula’s journey and that premature menopause does not define who you will be or become. It is a reminder that women are more than their reproductive organs, that your worth is not defined by your ability to conceive, and that you have the power to reclaim your lives and your bodies, no matter what challenges you may face.

     This is a story about an inspirational woman who has bravely and honestly opened up her life for all to read. I am honoured to have had the opportunity to read Paula's story and to write this Foreword. I hope that her words will resonate with women around the world and help to break the stigma and silence that too often surrounds menopause, especially when it occurs prematurely. Thank you, Paula, for providing an exceptional story that will be a source of comfort and inspiration for many other women.

 

Professor Andrew Shelling

Associate Dean (Research)

Faculty of Medical and Health Sciences

University of Auckland, New Zealand

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Nicole Evans (NZEM co-ordinator) and Andrew Shelling were integral in the final creation of Silent Warrior - Transformation.

Nicole was a Beta Reader for Paula at draft 7 stage, and Andrew wrote the incredible Foreword you have just read.

I am incredibly grateful to both. Without their input the book would not be what it is.

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