ALOPECIA AOTEAROA
We are a small group of friends living in the Waikato with a connection to Alopecia. We offer help and support to people living with Alopecia and their supporters.
Alopecia Aotearoa is a not-for-profit organisation.
Hi, My name is Ali Eketone.
My daughter Jordyn (now aged 10) was diagnosed with Alopecia Universalis when she was two years old.
After the initial shock of the diagnosis I realised my daughter still has her health and we have been very fortunate that it is not more serious.
Jordy is a very stong willed young lady and very confident without her head covered.
Although Alopecia has played a huge part in her life it has not disabled her from doing the things she loves.
Jordyn would love to meet new friends her age that suffer from Alopecia and I believe her confidence and attitude towards hair loss will rub off on anyone who is finding it hard to cope.
I also would love to meet other parents of kids with Alopecia, and help support you through your child’s journey with Alopecia!
Please feel free to contact me, I am happy to answer any questions you may have.
I look forward to meeting you. xxx
ABOUT US
feel free to contact us on email alopeciaaotearoa@gmail.com
Janine Antram – Aged 42 – Wig Provider with Alopecia
My name is Janine Antram,
I’m 41 years of age with two daughters, 24 and 20. In February 2010 my hair began to fall out in clumps and I was diagnosed with Alopecia Areata (partial hairloss). This quickly led to Alopecia Universalis (complete hairloss) and within weeks I had lost all hair on my head and body including eyebrows and eyelashes.
“DEVASTATING is too soft a word to describe how this felt”.
I totally understand what people with Alopecia experience. I was severely depressed to begin with however it DOES get easier with support, knowledge and information and that is the reason we are hosting this function. I am now a registered wig provider with the Ministry of Health and can claim subsidies for anyone experiencing alopecia so you don’t have to pay for your wigs. Please feel free to make contact anytime.
Leah Porima – Aged 18 – Student with Alopecia
Hi I am 16 years old and go to Hamilton Girls High school. I have been struggling with alopecia for almost 4 years now. I lost my hair in a time frame of about 2 months and since shaving my final patches have also lost my eyebrows and my top eyelashes, I now have tattooed eyebrows. Alopecia has definitely been my biggest struggle yet and I have had my bad days for sure, I have never been bald anywhere but home and don’t like the way I look without a wig but I have learnt ways to cope. My twin is probably the one to talk to if you are looking for inspiration, I definitely am in awe of her courage, walking around our school bald. I am more than happy to talk to anyone and share experiences and ways I have coped.
Kelly Porima – Aged 18 – Student with Alopecia
Hello there, I’m Kelly Porima and I am completely bald. I have had alopecia for 5 and half years. Being told I was diagnosed with a disease that would make my hair fall out was definitely one powerful sentence that has changed my life. There have been lots of ups and downs being bald, I believe it has made me a better, stronger person but then again not always happier. It is such a hard thing to go through and when you’re having a bad day, I feel like being bald just puts the cherry on top to make things worse! But having this disease has led me to great opportunities and changed the way I viewed life. I have met some amazing people and they are the ones who inspire me, my friend Hilary has been a huge inspiration to me, along with many other great baldy friends. What keeps me going is quotes. Here is one of my favourites “Everyone wants happiness, no one wants pain but you can't have a rainbow without a little rain.”
I am so excited to be starting something in New Zealand and hope that it will help others the way others have helped me.
Hilary Collins
Hey everyone, I’m Hilary and I’m 22 years old. I have had alopecia for just over 7 years now. I can’t really remember the early stages of being bald but it definitely wasn’t easy. I wore a wig during Year 10 at Church College but once I transferred to Girls High I didn’t care so much anymore. Ever since I got used to being bald others did too and now I walk bald and proud everywhere. I was so lucky to attend the Alopecia conference in America and while being there the thing that stood out to me the most was that you can do anything you want with your life and being bald doesn’t hinder that. It is what it is, I’m bald and that’s that, I have no hair but I just don’t care.
Matt Lock
Hey my name is Matthew and I'm 24 years old, I've had alopecia for 13 years. I was in my first year of intermediate when I first started losing my hair, first it was patches then all of my hair from eyebrows to eye lashes. It's been a very hard 11 years of people judging me but I am strong and proud of who I am today. I am comfortable with my hair loss and am so glad to have found and joined this support group to meet people with the same condition as me.
Jackie Talbot
Hi, my name is Jackie Talbot. I am 49 years old and was diagnosed with alopecia at the age of 45. I needed a wig within a week of being diagnosed. I am one of the fortunate people as my hair has grown back fully. I look forward to being able to help and support others who have or are experiencing alopecia. I have a wonderful family and friends who have been supportive to me. Please feel free to contact me.
Diane Ormsby – Mother of Twin Teenage girls with alopecia
Hi, I am the proud mother of Kelly and Leah. When Kelly was diagnosed with alopecia I had never heard of it and had no idea how it would progress or how many people it affected. It has been a roller coaster of a time over the past two and a half years, with some of the highs being attending the Alopecia conference in Washington DC with Kelly last year, seeing the strength and beauty of my two girls and meeting other people dealing with Alopecia in their lives. Some of the lows were watching Kelly go through the process without knowing how to help her or what to say, watching both girls tackle life without hair, eyebrows or eyelashes and initially having nowhere to turn to for support or advice. This process is the reason why I am part of this group trying to set up networks for others living with Alopecia.