Health & fitness

A rare syndrome stole half my face but won’t take my life – I always smile at my reflection despite what strangers say

Published

1 week ago

September 29, 2024

A rare syndrome stole half my face but won’t take my life – I always smile at my reflection despite what strangers say

A WOMAN living with a rare condition that caused half her face to cave in is asked on social media if she hates the way she looks.

Fortunately, it’s an easy question to answer for Gillian Kgotla, 29, who has fully accepted being disfigured.

Gillian Kgotla, 29, watched her face change from teenage yearsCredit: instagram/@gilliankgotl

Gillian says the "emotional toll" of her syndrome has been devastating — Gillian says the “emotional toll” of her syndrome has been devastatingCredit: Supplied

Gillian grew up in Botswana. She is pictured at four years of age, before her symptoms beganCredit: Supplied

She shares how she always smiles at her reflection in the mirror and her motivational videos online are gaining lots of attention, with her most-watched video going viral with 2.2million views on Facebook.

Gillian was not born this way. Once a chubby baby with a perfectly symmetrical face, it was only when she turned 12 and got ringworm that Parry-Romberg syndrome began to take over.

Gillian, who lives in Sussex, didn’t know what it was at the time and has only been formally diagnosed this year.

“It all started when I was 12 and developed ringworm under my left eye,” she said.

“Doctors gave me topical creams to use. But the rash came back and became itchy.

“After that, my eye became painful, red and swollen and my face started to melt away. It was so aggressive.

“One day my eye was shrinking, next my nose was wasting away, then my cheek. The skin started hardening and darkening too.

“Every day I had a new symptom, and it was altering every part of my life.

“I was in good physical health overall and all my blood tests were fine.

“I still went to school, but friends would ask, ‘What’s wrong with your face?’

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“I didn’t have any answers. Thankfully I had beautiful and amazing friends who always looked out for me.”

Over the years, Gillian lost her hair, some teeth, soft tissue, and her left eye caved in.

“My family were devastated, and my mum was so worried about me she began suffering with high blood pressure,” she said.

“She, like our whole family, became desperate to know the cause.”

As a teenager, living in Botswana where she was born, Gillian hated her reflection in the mirror and didn’t like seeing photos of herself.

“I realised I needed to create coping mechanisms,” Gillian said.

“I studied hard to become the best student in every subject and read lots of books, which helped me deal with bullying.

“One child called me ‘half a face’, which really upset me. But the more I educated myself, the better equipped I became at dealing with hurtful comments.”

The emotional toll has been devastating as I have had to fight to live a normal life
Gillian Kgotla

Self-development books helped Gillian work on acceptance and with time, and lots of self-care, she learnt to love her appearance.

“I would visit the library to read with friends and found the power of learning helped me massively and prepared me for if anyone stared or called me names,” she added.

Gillian was 21 when she met her husband.

Having received nasty comments from a young age, Gillian has been able to learn coping mechanismsCredit: Supplied

Over the years, Gillian lost her hair, some teeth, soft tissue, and her left eye caved inCredit: instagram/@gilliankgotl

Gillian was only diagnosed with Parry-Romberg syndrome this year, having seen videos about it on TikTokCredit: instagram/@gilliankgotl

Gillian was a happy and healthy child (pictured age nine) before she got ringworm under her eye, which rapidly led to more symptoms as her face "melted" away — Gillian was a happy and healthy child (pictured age nine) before she got ringworm under her eye, which rapidly led to more symptoms as her face “melted” awayCredit: Supplied

“When we met, I had built confidence already and my condition was never a topic,” she said.

“My husband was just interested in the person beyond my appearance – and was impressed with how wise I was.”

The couple married in 2018 and moved to the UK in 2022.

After 18 years with no answers, she stumbled across a young man on TikTok called Lukas Caldwell posting about Parry-Romberg syndrome.

It was the first time Gillian had been made aware of the condition and she began to research.

“As soon as I saw Lukas’s videos about living with Parry-Romberg syndrome, I knew straight away it was what I had too,” Gillian said.

“I had CT scans and MRIs to determine what I had and then an eye doctor who had seen the condition before, confirmed I had it.

“I’ve found an experienced specialist in India who can perform three life-changing surgeries to restore my face and improve my quality of life, so I’m humbly requesting donations on GoFundMe to help cover the surgeries and travel expenses.

“As well as deforming my appearance, the condition has brought constant pain, alopecia, severe migraines and vision problems.

“The emotional toll has been devastating as I have had to fight to live a normal life.”

What is Parry-Romburg syndrome?

PARRY-Romburg syndrome is a rare condition affecting the skin and soft tissue on one side of the face.

It normally starts in childhood and causes the skin and soft tissues to waste away.

This usually continues for between two and 10 years before becoming stable.

The underlying muscle and bone may also waste away, causing problems with eating and speech, and altering the patient’s appearance.

This can often mean someone with Parry-Romburg syndrome looks as though their face as ‘sunken in’.

The exact cause is not yet known, but it is thought to be connected to trauma, infections, hormonal problems and autoimmunity.

It is also unclear exactly how many people have Parry-Romburg syndrome, though estimates suggest it could be as many as one in 250,000.

There is currently no cure or specific treatment.

Source: National Organization of Rare Diseases

Despite having had her world turned upside down, Gillian shines with positivity and refuses to let Parry-Romberg syndrome dampen her spirits.

“I am so grateful to be able to live my life every single day,” she said.

“My mum constantly tells me I am a ray of sunshine and she is the one who encouraged me to start spreading my optimism to others.”

Gillian, who works in finance technology, created Facebook, TikTok and Instagram (@gilliankgotla) accounts and dishes out positive content every day.

“I get lots of DMs,” said Gillian. “Someone asked me if I hated myself because of how I look, and I told them, ‘No, I don’t’.

“It frustrates me when I see people moaning online about the smallest things. Brits complain about everything!

“But if people with small worries get a glimpse of my life, maybe they will learn to feel gratitude for what they have.”

It is thought some possible causes of Parry-Romberg syndrome could include trauma, infections, hormonal problems and autoimmunity.

But in her case, Gillian believes the ringworm she had as a child triggered it.

Now, she can’t open her mouth more than 0.8in (2cm) so struggles to eat like she used to.

‘BEAUTY IS A FEELING’

She says if she gets the opportunity to have reconstructive surgery, she will jump at it – just to be able to bite into a burger.

“I eat like a lady,” Gillian said. “I chew on one side and take small sips when I drink, though I might dribble.

“The vision in my left eye is reduced and the hearing in my left ear is not as good as in my right.

“I have lost half of my face and I’m not ‘normal’, but I still have a functional body and can live life beyond how I look.

“I get many people staring at me in the street, but they might be seeing someone with PRS for the first time.

“So I just smile at them and tell myself they are looking out of curiosity rather than hate.

“Self-love means I have to love my not-so-perfect face.

“Beauty is a feeling, not how you look. I’m just grateful I’ve made friends with the mirror and I hope others can learn to do the same too.”

Gillian says: "Someone asked me if I hated myself because of how I look, and I told them, 'No, I don’t'." — Gillian says: “Someone asked me if I hated myself because of how I look, and I told them, ‘No, I don’t’.”Credit: Supplied

After so many struggles, Gillian has learned that she can live her life without her appearance getting in the wayCredit: instagram/@gilliankgotl

Gillian is married and works in finance technologyCredit: Supplied

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Womens Workouts

My Gym Workout Routine | #gymworkout #gym #shorts

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22 mins ago

October 7, 2024

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My Gym Workout Routine | #gymworkout #gym #shorts

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Womens Workouts

35-Minute Full Body HIIT Circuit Workout (Dumbbells)

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1 hour ago

October 7, 2024

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35-Minute Full Body HIIT Circuit Workout (Dumbbells)

A full body HIIT circuit to build muscle and raise your heart rate at home!

We hit the total body in this workout, pairing an upper body exercise, lower body exercise, core exercise and cardio exercise in each circuit!

⭐️ This workout was brought to you in partnership with the Minnesota Beef Council (mnbeef.org)

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⭐THE WORKOUT: 35-Minute Full Body HIIT Circuit ⭐

► EQUIPMENT: Medium-to-heavy set of dumbbells (we’re using 10, 15 and 20 lbs in this workout).
👉My Dumbbells (affiliate link): https://www.torquefitness.com/#a_aid=nourishmovelove
*Discount Code: NMLTQ5
👉My oversized yoga mat is from Gorilla Mats (affiliate link): http://gorillamats.com?aff=5
*Discount Code: NourishMoveLove

► INSTRUCTIONS:
It looks like this:
✔️ 3 Circuits
✔️ 4 Exercises per Circuit (Arms, Legs, Core, Cardio)
✔️ Timed Intervals of Work (perform each exercise for 40 seconds of work, followed by 20 seconds of rest)
✔️ Repeat Each Circuit x2 Sets

►Workout Outline:
1️⃣ CIRCUIT ONE:
1) Arms: Push Ups + Kneeling Shoulder Press
2) Legs: Split Squat R/L
3) Core: 3-Second Lunge Hold + Dumbbell Press Out + 3-Second Balance Hold R/L
4) Cardio: Runner Lunge
Repeat x2

2️⃣ CIRCUIT TWO:
1) Arms: Back Rows + Bicep Curls
2) Legs: Staggered Deadlift + Clean Squat R/L
3) Core: Staggered Woodchop R/L
4) Cardio: Lateral Bound + Dumbbell Pick Up
Repeat x2

3️⃣ CIRCUIT THREE:
1) Arms: 1.5 Overhead Tricep Extensions
2) Legs: Lateral Squat
3) Core: 3 Side Plank Crunches + 3-Second Side Plank Hold R/L
4) Cardio: Lateral Lunge + 2 High Knees R/L
Repeat x2

►TIME STAMPS:
00:00 Introduction
01:15 Warm Up
06:30 Circuit 1
15:15 Circuit 2
24:10 Circuit 3
32:55 Cool Down

❤️ Find a breakdown of each of these exercises in this full blog post: https://www.nourishmovelove.com/30-minute-hiit-circuit/

🎶 Cue up your favorite music, press ‘play’, and let’s knock it out! Here’s my workout playlist: https://spoti.fi/32fRMuK
_________________________________________________________
⭐️ MORE of My MOST POPULAR Full Body Circuit Workouts on YouTube:
► 30-Minute Full Body CIRCUIT WORKOUT with Dumbbells — https://youtu.be/L8Fbfx-Uv6I
► 30-Minute Full Body Strength and Abs (Circuit Training) — https://youtu.be/Yaaugd1vh5k
► 30-Minute Build and Burn Workout (Cardio and Strength Training) — https://youtu.be/_gIrWcJLKM8
► 30-Minute Strength Workout — https://youtu.be/UrhEwluoxDQ
► 30-Minute FULL BODY Dumbbell Workout AT HOME (Circuits) — https://youtu.be/Tlq6w_iCZ9k
► 40-Minute FULL BODY Strength Training + HIIT Cardio — https://youtu.be/Vn5BLaNZMAE
_________________________________________________________

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#hiitworkout #strengthtraining #circuittraining

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Wrestling Workout #shorts #wrestling #bjj #mma

Published

2 hours ago

October 7, 2024

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Wrestling Workout

Neste Vídeo um Trabalho de Wrestling para fazer 7 diferentes Drills de 1 minuto por 15 segundos de descanso!

Redes Sociais:

Instagram: @leonardopitbullsantos

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45 Minute Full Body Dumbbell Workout [Strength Training]

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4 hours ago

October 7, 2024

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45 Minute Full Body Dumbbell Workout [Strength Training]

Tap in with us for a 45 minute full body dumbbell strength training workout if you’re looking build strength/muscle, endurance, and burn a lot of calories! 🔥 All you need for this workout is a soft surface and a moderate pair of dumbbells (for reference we used a pair 20lb and 10lb dumbbells). This workout is broken down into 3 total sets with each set containing different variations of the same movement patterns. There are no big modifications for this workout BUT the first set was designed for beginners, so you can always use the prior set(s) for modifications. We recommend doing this workout at least 2-3 x per week for noticeable results especially if you’re looking to build strength and lose body fat. Give this workout a go and be sure to drop a comment to let us know how you did!

Check out our other follow along dumbbell workouts:
30 Minute Full Body Dumbbell AMRAP: https://youtu.be/rEEZB68GTs0
30 Minute Full Body Dumbbell Workout https://youtu.be/4sUGg9mcMGU
20 Minute Full Body Dumbbell Workout: https://youtu.be/mf1xQS_Zlkc
20 Minute Light Dumbbell Workout: https://youtu.be/PFGeohvbNq8
15 Minute Full Body Dumbbell Workout: https://youtu.be/xqVBoyKXbsA
10 Minute Light Dumbbell Workout: https://youtu.be/mnzaEyTm-MA

The Home Equipment We Use:
https://www.amazon.com/shop/juicetoya…

Juice: @JuicetonTx

Toya: @ToyaCherrelle

Personal Training Business Page: @OneBodyLA

#JuiceandToya #dumbbellworkout

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Stay Consistent About GYM 🔥🍓🍓 #fitness #crossfit #workout #gym #gymlover #legday #glutes #shoulder

Published

5 hours ago

October 7, 2024

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#fitness #crossfit #workout #gym #gymlover #legday #glutes #shoulder

This is a place where I post REAL TIME, AT HOME workouts.
My goal is to help inspire everyone at all fitness levels to get up, get moving and reach their goals

#shorts #gymlover #fitness #workout #gym #crossfit #transformation #yoga #motivation #gymstatus #fitnessvalley

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30 MIN CALORIE KILLER HIIT Workout – Full body Cardio, No Equipment, No Repeat

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6 hours ago

October 7, 2024

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30 MIN CALORIE KILLER HIIT Workout - Full body Cardio, No Equipment, No Repeat

Here’s a killer post-Christmas Cookie Burner workout for you all! Time to get the heart pumping, burn some calories and sweat it out. Grab your mat, a bottle of water and let’s do it team!
♡ Find more workouts & challenges in my Grow with Anna APP: https://growwithanna.page.link/GetGrowNow

Please remember that we all are different and that you can make this your OWN workout… take a longer break when you need to.

WORKOUT DETAILS

👉🏼 Duration: 30 Min plus 5 mins of Cool Down Stretches
👉🏼 No Equipment
👉🏼 50 Sec Work, 10 Sec Rest
👉🏼 Level: Medium to Advanced
👉🏼 No Repeat

Music: https://www.epidemicsound.com

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💪🏼 MY HOME TRAINING GUIDE: http://growwithanna-shop.com

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✉ Contact (business inquiries): anna@fyndafit.com

D I S C L A I M E R

If you are a newbie start with a simple and easy exercise before attempting all advanced exercises. Performing exercises out of your capability might strain your muscles and you may get injured.

This channel offers health, fitness and nutritional information. You should not rely on this information as a substitute for, nor does it replace, professional medical advice, diagnosis, or treatment. By performing any fitness exercises without supervision like with this video, you are performing them at your own risk. See a fitness professional to give you advice on your exercise form. Growingannanas will not be responsible or liable for any injury or harm you sustain as a result of this video.

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Womens Workouts2 weeks ago

3 Day Full Body Women’s Dumbbell Only Workout

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A rare syndrome stole half my face but won’t take my life – I always smile at my reflection despite what strangers say

What is Parry-Romburg syndrome?

‘BEAUTY IS A FEELING’

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