Where do I begin???
Well, I began writing this blog back in 2011 as a way to express my emotions surrounding the autoimmune disease, Alopecia Universalis, which entered my life at the beginning of my journey into womanhood at the age of 21. I will not lie, this blog started off through anger and frustration (I am sure if you read my earlier posts these emotions came across quite strong – I am a wear my heart on my sleeve type of a person) of having a condition that, to be completely frank, no one gave two hoots about. Why was there no research for a condition that destroys people’s quality of life, negatively impacts their psychological state and completely changes their appearance to the world? Most importantly why was a symptom of a much deeper physiological condition, autoimmunity, being overlooked by the research world? It baffled me.
There were many charities for advice on alopecia or that offered support but not one for research. In 2012 I took the bull by the horns and with every ounce of energy, determination and passion in my body I founded Autoimmune Alopecia Research UK. With a very distinct aim, I began raising the profile of the disease through the charity so that I could then use this influential charitable body as a voice to entice and recruit scientists – scientists from a specific field whom I felt were being overlooked when trying to combat this disease, scientists with an interest in autoimmunity and the gut. It was no easy road and as I worked; I began to collect equally passionate people along the way who could also donate their time to the cause and carry some of the load which the charity presented. Some stayed a short while and some left, each giving what they could at that time of their lives. After many years of hard work and dedication, networking and attending research conferences along with talking to the right scientists, by 2015 the charity had gained some fantastic recognition in the research industry. We raised enough money to help fund the opening of the first biobank in Europe with Dr Iain McInnes, for research into Autoimmune Alopecia. Through the help of another amazing scientist called Annika Astrand from AstraZeneca, AARUK collaborated with AZ and Glasgow University to fund a Phd student to study the disease in depth. I cannot tell you what a moment that was. I really felt that I personally had achieved what I had set out to do- for myself, yes, a personal goal but also for the millions of people who lived with this devastating condition. All those years and time building a foundation from scratch in my spare time had eventually paid off!
Raising awareness of the Biobank Campaign on STV News
On Scotland Radio station with Kaye Adams 🙂
The Team @AAR-UK
The Initial AAR-UK Crew and my mother 🙂
Scientists working with Autoimmune Alopecia Research UK. Phd Student Kim Bain. Professor Iain McInnes from Glasgow University and Annika Astrand from AstraZeneca.
Professor Iain McInnes (Head of the Biobank)
Kim Bain – Phd Student
Annika Astrand who also has alopecia – Astra Zeneca
In the summer of 2013 I had also set up my own business in Glasgow in cosmetic tattooing which was going extremely well. Many of my clients were alopecia sufferers and it was during this time that I was able to collect much anecdotal evidence that confirmed my theory of research into the gut. I was also able to begin compiling a database for the charity of all of my clients and others whom I recruited as I walked down the street (seriously I used to stop anyone and everyone who I saw that had alopecia and ask them about their medical history, it was borderline obsessive :D) I knew AAR-UK was on the right track with the research which made the journey all the more exciting!
At the end of 2013, through attending alopecia conferences and meetings two extremely influential ladies entered in my life. Two ladies, although I didn’t know it at the time, who were about to change my life forever. Deanna Beattie and Martine Richards. They worked for a company called Freedom Hair in New Zealand. They convinced me to try Freedom – although I didn’t need much convincing when I saw Martine’s hair and Libby’s hair (Deanna’s Daughter who also has alopecia universalis). I would never have been able to tell these pieces were not their real hair. The scalp was visible, the hair moved and felt like real hair and Freedom suctioned onto your head so it did not move an inch if pulled…. you could even swim in it! No more itching or sweating and worrying if people could tell you were wearing a wig. For the first time in years I felt like my old self again, how I felt before I got alopecia. I was so upset that I did not have Freedom in my 20s. I loved Freedom so much I wanted to get the word out and Deanna asked me if I would like to be the Scottish Independent Agent for Freedom Hair. I did not hesitate – I was very privileged.
Myself, Martine Richards and Denna Beattie from Freedom Hair – the wig that changed my life!
By 2014 I was working full time, cosmetic tattooing, seeing clients for Freedom Wigs and running the charity , AARUK and I was burning out- big style. I got frustrated that I did not have enough time to spread around each area of my life and I was beginning to suffer. I felt that I was looking after all of my lovely clients and neglecting myself but I just could not take time off and it was not in my nature to give up (especially give up on things that I was so passionate about) so I pushed on whilst I tried to think of a way to reduce my load….. until the unthinkable happened….
In the summer of 2015 my best friend Rachel Clarke was set to marry her fiance Paul Carberry in Ireland. I vividly remember being in tears a week before the wedding as I had such little time to find an outfit for her wedding because of my work. I had absolutely no work life balance, it was depressing and I remember having a panic attack on Sauchiehall Street in Glasgow and my friend Lynne had to calm me down. I did get an outfit and I did make it to Ireland two days before the wedding for the start of the celebrations…… and there he was.
Myself and Rachel Clarke – who’s wedding changed my life!
Now anyone that knows me knows I am not a romantic. I never believed in meeting someone and instantly having a connection and I had actually given up hope of ever finding a partner. I was a workaholic….. but there he was………
I met my best friend, my soul mate and the other half of me at my best friend, Rachel’s wedding and this man was Rachel’s new husband’s younger brother! Honestly you could not write it as a story. Mark lived in Australia with his two boys Ethan and Jacob and within a couple of months we had no hesitations, to make the decision together, for me to move to Australia for us to start a life together. Within those 6 months I closed my cosmetic tattoo business, trained up a new independent agent for Freedom Wigs, so all my lovely clients were left in good hands, and handed over the reins of the charity (The latter was done with the most reluctance).
Mark coming over to get me haha 🙂
Ethan and Jacob horseriding in the bush.
Me and Bentley
So here I am, 6 years on from writing my first blog post. I now live on Queensland’s beautiful Sunshine Coast with the most amazing man who is everything I could ever wish for. He has two wonderful boys aged 12 and 10 who accepted me into their lives with open hearts and open minds. I have recently set up my new cosmetic tattoo business, Dermaventure after achieving my Australian Residency Visa and I am very happy.
If you read “My Article” on the home page I am hoping this blog post will give you hope as a comparison if you too suffer with alopecia. Never give up. Always have faith in yourself and most importantly love yourself. I did it and just look what happened!
“I am going to embrace my 30s, be open with my alopecia, wear a smile, laugh a lot, have a carefree attitude and who knows someone might just want to date a bald girl ;)”
I traded my life back in Scotland, everything I worked so hard for, for something much bigger. Love.
Someone asked me recently, do I have any regrets? I do. Just one. The charity AAR-UK. It was my life’s goal. Although my own life has totally changed I still live with alopecia everyday and it never goes away. I promised so many people we would find answers and I believed that and I still do believe that. Although I am nothing to do with AAR-UK anymore I will never give up trying to cure my illness, even if that means starting again in Australia 🙂
If there is anyone following my blog who lives in Australia and wishes to make contact please do so. My details are on the contact me page.
x Jayne x