Hannah Gerrard’s TS story
I was diagnosed at birth. The doctor noticed I had puffy hands and feet and ran tests from there. They then discovered I had a coarctation of my aorta, which I later had surgery on.
Having TS has impacted me in different ways at different points in my life. At age 5, I had heart surgery (repair of a coarctation of my aorta), and as a young girl I had constant ear infections and many sets of grommets. Physically, it impacted me a lot at that age. As I got older, the mental and emotional impacts were more challenging than the physical ones - I struggled with maths at high school, and learning to drive took a lot of time. Now, being almost 30 and in a relationship, I am thinking more about the fertility aspect and whether I want to go down the path of egg donation or not, which is a combination of mental, emotional and social impact as people around me start having children. It is definitely a multifaceted, lifelong condition that does impact you in many ways.
I have overcome the spatial awareness challenge of learning to drive! It did take time and patience, but I now consider myself a confident driver. I overcame this by taking lessons and lots of practice. I have overcome the challenge of going through 10 years of growth hormone injections - worth it to get that extra height! I overcame this through reminding myself that it was helping me get that little bit taller- and I think a few bribes from mum and dad in the younger years! I overcame the challenge of becoming an active person after heart surgery. I have always been active and still am today, and I don't take that for granted.
My experience accessing medical care has been positive in that I was diagnosed early and put on growth hormone and hormone replacement therapy at appropriate ages - I think my paediatrician was fantastic. However, living in Wanaka and having TS has been hard and a bit inconvenient. As a child, my mum would drive me 3 hours each way to Dunedin Hospital for paediatric appointments every 6-12 months. Nowadays, I still have to travel to Dunedin for things such as cardiac MRIs and echos/ecgs, but endocrinologist consultations are done via Telehealth, which has made a huge difference, and bone density scans can be done in Queenstown, only one hour away, which is more convenient. Suggestions I would have for others seeking care would be to get your regular tests done-blood tests, hearing tests, bone density scans etc. It will help you keep up to date with where your health is at and help you make any necessary changes.
I am proud of many of my achievements - it is hard to pick just one! I am proud of gaining a university degree and then using that degree to move to Japan for two years. Studying a certificate in sport and exercise and doing personal training sessions with people in the comfort of their homes has been something I've done alongside a full time job for the past few years and is very rewarding and I am proud of that. I have also saved enough money for a deposit on a section to build a house this year, which is a great accomplishment.
Kate Beaumont-Smith's TS Story
My child Holly, age 7 has TS. Pre-natal testing showed Holly had a larger nuchal fold (the measurement at the back of the neck). We had a NIPT blood test which was inconclusive and then an amniocentesis. That was also mixed, however the rapid test showed mosaic TS and then the full test showed monosomy TS. At birth they took cord blood which showed mosaic TS. Holly has 57% X and 43% XXX.
At first it was challenging as you read the statistic that 95% of babies don’t make it but once Holly arrived it was special. She has opened our world and is such a happy, funny and caring individual. We’ve had challenges along the way but it is a positive journey. The biggest challenge is whether something is TS related or just a Holly thing. Arguing with WINZ is also another challenge, I tend to get grumpy and fix it.
When accessing medical care I always try to clarify with the consultant what we should be expecting when. I have struggled with knowing a bit more than a GP when we don’t see our normal one. A neonatal consultant told me to remember you know your child better than every doctor, only you can advocate for them.
I’m so proud that Holly now does her injections every night by herself. She doesn’t moan and just does it. This is very cool.
TS is a journey. There are many positives, don’t believe the negatives.
Shona Thompson’s TS story
I was diagnosed as a baby in the early 80’s. The doctors noticed my puffy feet so they did various tests, but they weren’t exactly sure what I had - I was formally diagnosed with TS when I was 9 months old. My parents were told some pretty daunting things about my future, but they have loved me unconditionally right from the start and did all they could to help me lead a life that was not defined by TS.
Having TS has impacted me in quite a few ways at different stages of my life – I’m 45 now. Being short has always been challenging, not only physically, but in the sense of society’s attitude towards, and treatment of short people, where I’ve sometimes felt overlooked. My self-esteem has fluctuated at different times in my life. Having TS has given me a greater awareness of what it feels like to be “on the outside” and a sensitivity to include those who may feel excluded.
Social situations and making friends has not always come easily to me and in my younger years, I would hide having TS so I could fit in. I so desperately wanted to be “normal”. Telling my future husband, while we were dating, that I have TS was one of the scariest things I’ve done, but I’m so thankful he saw me and loves me just for being me.
One of the biggest challenges I continue to overcome is hearing loss - I had a lot of ear infections as a child and a burst ear drum at one stage. I had a grommets operation at about 7 years old. I’ve been wearing hearing aids for six years now and had to grapple with the stereotype that hearing aids are for old people. They have actually helped a lot, my hearing loss was so gradual that I hadn’t realised how much I had lost.
Like many with TS, maths and spatial awareness are not my strong points. I learnt to drive at the usual age, but it does require extra concentration for me, especially parking. I think mentally saying “you can do this” and not avoiding driving is important.
The medical care I received as a baby and child was great, I was under a specialist and I did growth hormone injections for about four years from around the ages of 10 to 13. This was in the early 90’s and I remember being quite excited that they would help me grow a bit taller. Once I learnt how, I administered them myself, starting out with syringes and then a pen injection which made it so much easier. After I finished the injections, I was put on the contraceptive pill, for the hormone content and have been under GP’s ever since. Over the years, I’ve kept having to remind them about TS, that I am not taking the pill for birth control. Up until now, I’ve been pretty healthy and haven’t had many other major medical complications. I have annual blood tests and regular heart checks, but I know I’ll probably need extra medical support going into the next phase of my life with menopause on the horizon.
As I think of what I’m most proud of and my accomplishments, I have an enormous sense of gratitude. I’m a Christian and my faith has always been a big part of my life - bigger than TS. The knowledge that God knew me before I was born and created me has always been such a comfort – He doesn’t make mistakes and He knows and created each one of you too.
I’m proud of so many things - being married for twenty-one years to my wonderful husband who is such an amazing support to me, two years living in China and experiencing life overseas, gaining a counselling degree, and adopting our beautiful NZ born Chinese daughter when she was two months old. She is 10 years old now and the opportunity to become a Mum has been such an amazing blessing that I never expected, but so deeply desired.
I’d really like to encourage parents of young TS daughters that with your encouragement and support, they will grow up and become wonderful women and live fulfilling lives, being accepted and loved, just as they are.
Julie Williams' TS story
I found out at 18 years old that I had TS when a doctor did blood tests after I was not developing normally.
I've been lucky and have a fairly normal life and health. My main challenges have been my height and being unable to have children. I overcame these by accepting my height and creating a happy life without children. I was lucky to meet a husband who accepted me as I was.
I have had no major problems accessing health care.
The things I am most proud of in my life are that I have taught Girls Brigade for 25 years and been happily married for nearly 28 years.
A piece of advice is to be up front about Turner Syndrome when you are entering a relationship .
Clare and Tony Fuller's TS story
(written with Hannah’s permission)
Our connection to TS is that our daughter Hannah has TS. Hannah is now 24 years old and we found out during our pregnancy that she has Mosaic TS. This was through routine testing (whilst living in Australia), although she was born in NZ
The impact of TS includes the following aspects. We were semi-given the wrong advice when Hannah was little and told that we didn't need to worry about doing anything until closer to puberty. Because of this, Hannah wasn't aware she had TS until she was 11. Whilst she was always the shortest child in the class and she struggled with spatial awareness and maths, she had a pretty normal childhood. When Hannah was 11, we moved to Wellington and she saw a paediatric endocrinologist who immediately got the funding for growth hormone. Because she was late to the party with starting growth hormone, we also needed to suppress puberty. This was all incredibly stressful for Hannah, but it helped her further develop her resilience, which she has needed over the years.
Hannah has overcome challenges such as being short, realising sports like netball are not really going to be easy, learning to ride a bike, learning to drive (passed all the tests the first time!), learning difficulties such as dyslexia, and other health-related conditions that have arisen because of TS.
With regards to medical care we would suggest being aware that not all medical professionals have extensive knowledge about TS. Hannah's paediatrician in Auckland (when she was born) was a well known/respected doctor, considered to be at the top of the field. However, he didn't know too much about TS and should have put Hannah under an endocrinologist straightaway. After we experienced excellent care in Wellington, as a parent, I knew more about what we needed to look for. The doctors back in Auckland, both through Starship and now adult care have been good.
As parents, we are incredibly proud of what Hannah has achieved. When Hannah started secondary school, she struggled with work. However, her determination saw her achieve Levels 1, 2 and 3 NCEA with Excellence. She completed a BSc with a double major in Food Science and Food Safety. She was the top student in those subjects. After supporting her grandmother at a medical appointment, Hannah made the decision that she wanted a career that would help people. This saw her completing a Master's Degree in Audiology. Hannah is now working towards a PhD, with her topic being Implementing Guidelines for Nutrition in Paediatric Oncology in Aotearoa New Zealand. Hannah is proud of her academic achievements, but also proud that she can contribute to helping people. I think her own physical, social, and emotional issues that she has had to overcome have helped Hannah become a more empathetic adult with greater awareness of those less fortunate.
Isla Kirkham's TS story
My name is Isla, I am 26 years old and I have TS. I was diagnosed with Turner's at approximately 8 weeks via karyotype. The doctors looked at me when I went into respiratory arrest and they also saw the 'Turner’s appearance' of webbed neck and lymphedema.
TS has impacted me in the following ways - where to start! I have had chronic ear infections, multiple burst eardrums, and now hearing loss. I have been recommended for hearing aids.
Premature ovarian failure, hormone levels found 'menopausal' at 18 via bloods have been other impacts of TS, along with anxiety and learning difficulties. Maths was a MAJOR challenge for me! Years and years of after school tuition and perseverance was the only way to get through.
Overall I have been happy with accessing medical care, it just took time to find the right endocrinologist for me. That being said ... never let any medical issues be left and labeled as 'just TS’ unless you're certain there is nothing else going on. If you have concerns, get another opinion. Turner Syndrome has a lot to answer for absolutely, but you do not want any issue left undiagnosed/sorted because the symptoms were assumed to be TS related.
I am most proud of my nursing degree, and now my post graduate certificate.
I am a butterfly. Let me show you how I spread my wings and fly. Better yet ...
We are butterflies, let's spread our wings together.
Annabel's TS story
Kia ora everyone, my name is Annabel.
I was diagnosed with Turner Syndrome in 2020 at the age of 9. I started getting questions from my peers and older kids about my height, which really annoyed me and made me upset. At that stage I was 113cm and my parents took me to see our doctor. He set me up with a paediatrician who got lots of tests done to work out the diagnosis. I vaguely remember the paediatrician telling us I had Mosaic Turner Syndrome, which has mainly affected my growth. I remember feeling worried about the injections and the pain, but I can confidently tell you now the needles are tiny and it doesn't hurt too bad. Since starting the growth hormone treatment I am closer in height to my peers which helps me feel like I fit in. I have adjusted to the injections and started on estrogen patches.
Last year when I was 14 I got very sick with reflux type symptoms, which made it difficult for me to eat without feeling unwell. I was diagnosed with anorexia in August 2025, which has affected my growth dramatically. I expected to have a growth spurt which has been delayed but now that I’m healthier we are still hoping that the growth spurt will happen. Despite a tough year with lots of absences and doctor’s appointments I was awarded second in Year 9, which was a massive achievement for me considering the year I had. I’m pleased to say when I saw my paediatrician again this year I had grown a couple of centimetres and am now 144cm. I’m in Year 10 this year, and I’m back involved in canoe polo, netball and doing more running and walking, which are things I’ve always enjoyed.
For anyone who has just been diagnosed with Turners I urge you to be brave and remember to talk to your loved ones for support!
Caitlin Martin's TS story
I have TS and I was diagnosed when I was 4. My Grandma is a nurse and noticed I was not growing as I should be so advised Mum to get me tested (in general) and it turns out it's Turners :)
Having TS has impacted me in several ways. I have a Bachelor's degree and a Teaching degree but I struggled through it. I am not overly good at maths, and struggle with emotional regulation at times. I constantly had earaches and grommets up until I was 25 (I'm now 33). Physically too my chest is a typical "shield" chest which I struggle with sometimes in relation to body proportion etc.
As for challenges - health is a big one. Ears and earaches, the slightest bit of water and I have an earache for a day or two. Fertility is another one. I have been seen by Fertility Associates which was an easy reference and they were amazing and supportive in their findings and information.
Accessing medical care is hard. I have been mainly between Waikato and Auckland DHB’s growing up. I am now in the Manawatu and have been told I am "not an urgent matter or high priority" and haven't had a referral yet which is disheartening. I would just advise others to advocate for yourself and keep nagging until you get heard.
In my life I am most proud of what I have accomplished with my studies :)
Jayne Fortune-Ayers’ TS story
This story is about our daughter Maisie.
Maisie is the third and youngest child in our cool wee family. As I was considered a ‘geriatric pregnancy’, we were closely monitored with extra testing. When we had high detection levels in my blood work we were offered a NIPS test which confirmed TS. I remember that phone call so vividly and the world crashing around us. Next step was an amnio to confirm the diagnosis of standard Turners. Geneticists gave us more figures and percentages than we could comprehend, but the one that sticks was ‘she had a 5% survival rate’. The next few weeks and months were a blur of tests, scans, appointments, more numbers and the offer of termination. We couldn’t do that, she was very much wanted. We were told she has an interruption of the IVC in her heart, a horseshoe kidney, may be deaf, may be blind, will be little, will be infertile … so many uncertainties.
Maisie was born by emergency c-section as she was high risk and was presenting breech and had meconium present. She came out blue and not crying, mum was vomiting. Then that magic sound of a baby's first cry. Her apgar was 9, and NICU was not needed. 6lbs 3 ozs and 42cms long. She latched easily, slept badly, and cried that sweet sound. Her initial vision and hearing tests were normal. Her echo was seemingly ok. Her bloods confirmed 100% TS and we stayed in hospital for a week while mum recovered and tests continued.
Maisie is now 6 years old and thriving at school, thriving at life, and beating the odds.
She started her growth hormones at 6 months old and tolerates it really well (most nights) and is on a ‘normal’ growth trajectory. She had many hearing issues and three sets of grommets, including adenoid removal and a hearing aid. Maisie has just been discharged from the hearing and speech clinic with normal range hearing and other than being colour blind, has perfect vision. Her school learning is on par with her peers and she has also finished speech language therapy. Currently we are investigating tummy troubles, (which is looking like IBD and a thickening of the bile duct), sleep clinic (to address sleep deficits and snoring), behavioral issues (likely ADHD), and growing pains. She takes all her appointments in her stride and amazes us regularly with her intelligence, wit, and empathetic nature towards everyone and everything. We also recently discovered she has a uterus which blew us away as the expectation was she would have zero reproductive organs.
Maisie loves dress ups, lego, k pop, singing and dancing, and is starting gymnastics and singing lessons this year. She has incredible muscle tone and can easily do one handed chin ups! Maisie is so incredibly special and we wouldn’t change her for the world (except maybe the sleep thing!) Thanks for reading our story
Carla Tudreu’s TS story
My name is Carla, and my husband is Nathan. We live in Palmerston North. Our daughter Daphne is almost four years old, and has Turner Syndrome.
We found out Daphne has Turner Syndrome when she was about 3 months old, but we knew she had some pretty serious complications from our 12 week ultrasound, including a very large cystic hygroma and fetal hydrops. Our pregnancy with Daphne from that point on was full of weekly monitoring, fortnightly scans, several trips to Auckland City hospital (we had been living in Auckland at the beginning of the pregnancy and kept our care there until 32 weeks). By the grace of God at 32 weeks her hydrops and cystic hygroma had resolved. She was born at 38 weeks 6lbs 10ozs and is our precious miracle. Genetic testing at 3 months old confirmed that she has Turner Syndrome, which we suspected. However, we have been fortunate that she does not have any heart issues currently, has only a minor kidney issue, and is otherwise a very healthy, friendly, social young girl.
We have a fantastic paediatrician at Palmerston North Hospital which has made navigating this journey a lot easier. Daphne still gets quite anxious with all her hospital visits, but as she gets older we are able to explain to her in advance what each appointment is for and what is going to happen, and that has helped hugely over the last six months or so, which is a relief for us as parents as she has lots of appointments, mainly for monitoring. Daphne started her growth hormone in September last year. It took a few weeks to get used to the injections, but now they are just part of her bedtime routine and she is incredibly brave with them. She even pretends to give her dolly an injection before bed sometimes too!
Daphne has a very vivid imagination, she loves to sing and play make believe games. She loves dinosaurs, Paw patrol and princesses, and is a very outgoing, friendly young girl. She loves babies and small kids, and is getting a baby sister in April which she is most excited about. She has a lot of energy and brings our home a lot of joy and laughter. She really is our little miracle!!
There will no doubt be many more challenges as she grows up with Turner Syndrome, and it has been really encouraging to see the different stories and hear the journeys of other girls and women with Turner Syndrome and to see you all succeed and overcome the challenges that Turner Syndrome brings. We feel really blessed to live in New Zealand where there is so much support for Daphne and to have access to great medical care here. Daphne has a super bright future ahead of her, and we are excited to see what she achieves.
Thank you for letting us share our story. We would love to connect with more of you and if anyone lives in the Manawatu area please let us know!
Phoebe Wilson’s TS story
I was diagnosed at 15 years old (just 6 months ago!). It took years of blood tests, and many many doctors appointments. I have always been one of the shortest in my year (and in my family). My original GP didn't do anything, so it wasn't until we moved when I was 15 that I was referred to a paediatrician. My Turner's diagnosis was like an explanation of everything that had been going on that was all pieced together - it helped to make sense of what I was going through.
Turner Syndrome has impacted many parts of my life. As a baby I had constant ear infections, and was very unsettled with colic and cried a lot. We lived in a small town and so we didn't have easy access to specialists. I have always been pretty uncoordinated, but our family was pretty active so I still learnt to ride a bike, ski, and play ice hockey. I have a few good friends from Kindy, but many people in my year at primary school moved and I have found it hard to make new friends. Starting High School was really hard and I struggled with relating to the kids in my class and found classrooms frustrating and overwhelming sometimes. I usually hang out in the library where it is quiet!
The challenges I have faced have been:
*Height related bullying - during my first year of Intermediate a small group of people thought that it would be funny to make fun of my height (I once found part of my school uniform on top of the cubbies in the P.E changing room). This was pre-diagnosis so was extremely upsetting, as I didn't know there was a reason for my below average height.
*Coeliac - I've always had tummy troubles, so this wasn't a surprise. (I was actually diagnosed as Coeliac on the same day as I was with Turners.)
*Getting sick all the time - I have had lots of time off school sick from the start of Intermediate particularly.
*Being neurodivergent - I get overwhelmed very easily with crowds, noise, and changes of plans and expectations. Sometimes I find it hard to focus at all, and other times I can get so engrossed in something that I can lose track of time! I've had a bit of support from school, and counselors over the years which helps.
My experience of medical care has been largely positive post diagnosis, but it took almost 16 years to find out that I have TS. My suggestions to others - just ask! I was fortunate enough to have a member of my school staff ring NZQA on my behalf to ask about assessment conditions for people with TS when I mentioned that I was struggling, and ended up with separate accommodation and extra time for my exams.
I am most proud of the following accomplishments:
*Ice Hockey - I was lucky enough to be able to play in a Secondary Schools Ice Hockey team in Year 10 and 11. I was glad to have this opportunity, especially as I was not the strongest player in my club team in Year 10. My first tournament was a great experience as our team worked really well together. No-one judged me as a younger, less experienced member of the team (I was the only girl in the team who wasn't in the NZ U18 Women's team, and was likely one of the smallest in the league). As a result of the supportive team I became more confident and started playing better. I ended up keeping on playing and was able to come back the next year. Some of my best memories of these tournaments is that I stole the puck off a player almost 1.5 times my height (It is scary facing those really tall people though), and being known as the little gritty kid on the Mackenzie team.
*Girl Guiding NZ- I started Guiding at age 10.5, and quickly set my sights on achieving all my badges. This was hard because I started in the section I was in a year late. After achieving the highest badge in the Guides section, I decided to take the next section a little slower. Now I have finished the requirements for the Queens Guide (Highest award in NZ). I have also been selected as part of National Contingents twice. I went to Murwillumbah, Australia in 2025 for the Australian Jamboree, and I am going to Windsor in the UK for the WINGS Jamboree later this year.
One of the best things that has happened is that my diagnosis taught me just to be myself. I had struggled with this since changing schools for Year 11 in 2025. The school that I am at is quite competitive, and I had been really struggling with that. It taught me just to put my best foot forward and do the best that I can.
It has been great to be connected through this group and I am looking forward to my first TS event this weekend - which I have organized in Peel Forest. I hope those in the Canterbury area can join us!
Mel and Julian Stokes’ TS story
Our daughter, Sophie aged 8 has TS. Sophie was born in Lower Hutt, Wellington in a big hurry at 32 weeks when I (Mel) developed pre eclampsia. Due to her prematurity and low birth weight (under 1.5kg) she was given a pediatrician for two years. Her lack of growth was initially put down to prematurity but after two years of minimal height growth her pediatrician tested her for growth hormone deficiency. This test was negative but they also ran a microarray blood test at the same time which diagnosed her TS. It was the week of Christmas just as covid hit, she was two and a half and none of us were expecting it! She had no health issues, was meeting milestones and her only symptom was lack of height and difficulty putting on weight. Now at the age of eight, she is on her third set of grommets, has glasses for mild short sightedness and has been diagnosed with global developmental delay.
The biggest impact for Sophie has been social. She has been held back at school a year due to the developmental delay but still struggles to connect with other kids as she still lags behind developmentally. Sophie's biggest challenge has been learning. She is at a super supportive school, the best thing they did was offer to hold her back a year. She had a massive developmental leap at 6 and holding her back a year meant she is now in a group with her peers in spelling and reading. She is way behind in writing and a bit behind in maths.
With regards to accessing health care, somewhat surprisingly (she was diagnosed just as covid reared its head) we have had minimal issues accessing care. She has had the same pediatrician for eight years at Hutt Hospital, and has an endocrinologist at Wellington Hospital. We are under ENT, cardiology, radiology, endocrinology, pediatrics, dental and child development service. We have regular appointments with everyone apart from child development, she is 12 months overdue for her follow up with them. She started growth hormones at age three, and this has been relatively straightforward (she complains but allows us to inject her without too much fuss).
We are super proud of the progress Sophie is making at school, she is an ace at spelling and reading in particular. She also is a water baby and recently started swimming lessons which she is really enjoying (and good at!). We are also super proud of the person she has become, she can stand her ground/is not afraid to tell others when she thinks she is being treated unfairly.
Laura Slade’s TS story
I have TS. At the age of 12 I was bullied a lot due to short stature, and no signs of puberty that a lot of the girls were going through. I would come home crying a lot. I went to the doctors, and spent a night in hospital having tests done. They took bloods every 2 hours, for 24 hours.
Having TS has impacted me physically, such as reaching things, and muscle strength; mentally in the area of maths; emotionally and socially, I find it hard to keep friends.
The challenges I have had and overcome include having a lot of ear infections as a child and I've lost count of how many times I burst my eardrums. Having hearing aids has been a huge help, I didn't realize how bad my hearing was. I get sick a lot over the winter months with laryngitis and ear infections. I go on antibiotics at least 3 times. To combat this I have Bliss K12 tablets. These help build up your immunity, and I haven't been sick at all.
My experiences with medical care is that I am finding the doctors don't know too much about TS.
I am most proud of these accomplishments in my life:
1995: Obtained National Nanny Certification at EIT.
2000: Got married.
2005: I had my daughter.
2018: Obtained Vet Nursing level 5 at EIT
I have had 8 rounds of IVF. The second attempt I had a miscarriage. I had my daughter on the 6th attempt, and on the 8th attempt I had a miscarriage.
I now have osteoarthritis in my hip joints. I combat that with lemon, honey, ginger, tumeric tea every morning.
The Legal Bit
Turner Syndrome Association of New Zealand Incorporated
359 Fairview Road, Te Awamutu
Incorporated Societies 595311
Charities Number CC46754