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Soniya Vadher

@soniyafit

63.8K

followers

821

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▫️Ultra-Rare Disease Warrior 🐺⚔️
▫️Familial Chylomicronaemia Syndrome
▫️Founder of @shwariofficial
▫️Healing Out Loud 🤍
📍London

POSTS STORIES REELS TAGGED

FUN FACTS ABOUT ME

I just wanted to say thank you to all my wonderful followers 🤍

Thank you for all the love & support you’ve shown me over the last couple of years. I’ve met so many amazing people on here. A lot of you have told me how much of an inspiration I am to you but honestly you guys have no idea how much you motivate & inspire me, so for that, thank you 🙏🏼🤍

If you’re new to my page or you’ve been following for a while, here are some fun facts about me:
🪬 I am the middle child a.k.a ‘problem child’ 🙃
🪬 I have a bachelors degree in Television Production 🎬
🪬 Favourite movies: Wolf of Wall Street & Scarface 🍿
🪬 Huge fan of Michael Jackson 🎶
🪬 I share my birthday with my daughter (question for hubby @shayeworld: What’s worse than living with a Virgo? Living with two 🤪)
🪬 I have an ultra-rare medical condition that affects 1 in a million people 🦓🧬
🪬 If I eat too much fatty food my blood turns white***🥛
🪬 I started learning Spanish during the first lockdown 🇪🇸 ¿Habla español?
🪬 I hate milk 🤢
🪬 I used to make cakes 🍰 (my cake page: @mytreatheart)
🪬 I have never tasted tea in my life ☕️
🪬 In my uni days, I attended a ‘trial photoshoot’ for an Asian magazine (I won’t mention which one) & I got told I wasn’t pretty enough for them 💀🥲🔫
🪬 I recently got asked for ID for sugar-free Red Bull…I’m 34 😐
🪬 I can’t swim 🥴

Do we have anything in common? Let me know in the comments!

***When someone with FCS eats fat, it travels around within the blood as triglycerides. These then clump together as chylomicrons causing symptoms of ‘milky white’ blood. When blood is drawn the plasma usually has that milky white appearance due to excessive lipids.

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#funfacts #factsaboutme #funfactsaboutme #welcometomyworld #reintroduction #introduction #hellonewfollowers #michaeljacksonforever #rarediseasewarrior #mentalhealthadvocate #invisibleillnesswarrior #ibdwarrior #ulcerativecolitis #crohnsandcolitis #desiinfluencer #browngirls #mumof2 #momof2 #browngirlgang #southasianinfluencer taken in London, United Kingdom by @soniyafit

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4 years ago

Today marks 🧬 FCS AWARENESS DAY 🧬

Being positive when life is tough isn’t always easy but it is possible. Acceptance & self-love is a very long & difficult journey but if you put your mind to it, you can overcome A N Y T H I N G 💫

Last November I was featured in @rarerevolutionmagazine ‘s spotlight edition. I feel incredibly honoured to have a 5 page spread on my experience living with Familial Chylomicronaemia Syndrome (FCS) & being on the front cover!
Swipe to read the article 🤍

▫️WHAT IS FCS?▫️
Familial Chylomicronaemia Syndrome (FCS) is an ultra-rare genetic condition that affects 1 to 2 in a million (I guess you can say I’m 1 in a million 🙃)
People with FCS have difficulty properly metabolising or absorbing fat. This is because they lack, or have limited amounts of the enzyme lipoprotein lipase, or what enzyme they do have doesn't work.

FCS is an invisible condition. Although often looking healthy, people with FCS can be living with many symptoms which diminish their lives.

▫️SYMPTOMS▫️
The most serious of the symptoms of FCS is pancreatitis caused by the build up of chylomicrons. Pancreatitis is extremely painful & can be life threatening. Other symptoms include ‘brain fog’, fatigue, diabetes & depression.

▫️TREATMENT▫️
There are currently no treatments available specifically for people with FCS. Lipid-lowering drugs have only a limited effect for people with this condition. The only treatment that significantly helps to minimise symptoms is dietary management.

▫️DIET▫️
People with FCS can only eat a maximum of 10g of fat a day, which is equivalent to 1/3 of an avocado or 3 & a half walnuts (nuts, right?! 🤪)

Please share & help me raise awareness if you feel people need a better understanding of rare & invisible conditions such as FCS 🙏🏼🖤
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📷 @jemimashoots
#rarecondition #raredisease #fcs #hyperlipidemia #lipids #plasma #plasmapheresis #plasmaexchange #rarediseaseawareness #magazinearticle #magazinefeature #highriskpregnancy #pancreatitis #geneticdisorder #nhs #hammersmithhospital #indian #rarediseaseuk #southasianwomen #triglycerides #support #health #wellbeing #healthiswealth #soniyafit #soninamillion taken in London, United Kingdom by @soniyafit

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5 years ago

I just want to say a quick hello to my new followers & introduce myself 🤍

My name is Soniya, I’m a wife & mum of 2 - I have an 8 year old son & a 2 year old daughter 🥰

When I was around 5 years old, I was diagnosed with an ultra-rare disease called Familial Chylomicronaemia Syndrome (FCS). FCS is a genetic disorder that affects around 1 in one million of the population (I guess you can say I’m 1 in a million 🙃)

About 2 years ago, I started opening up about my condition & since then I’ve used my social media platforms to raise awareness, educate & help others (through my experiences) to accept & cope with rare diseases & other invisible illnesses.

I always keep it real, I share my struggles & I never sugarcoat or glamourise my life for the sake of social media. I am unapologetically me 🤍

That’s it, that’s me ☺️ but I want to get to know my followers too so come say hello & introduce yourselves ⤵️🤍

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#comeandsayhi #raredisease #rarediseaseawareness #rarediseaseadvocate #invisibleillness #mentalhealthawareness #healthandwellness #medicalanxiety #oneinamillion #wifeofaking #raremom #mumof2 #unapologetic #unapologeticallyme #authenticallyme taken in London, United Kingdom by @soniyafit

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5 years ago

Our birthday week 🩷

#birthdayweek #birthdaytwins #virgowomen #mummyanddaughter #forevergrateful taken in London, United Kingdom by @soniyafit

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a month ago

Happy 7th birthday to my little heartbeat 🩷

The greatest gift I could have ever received on my own birthday 🙏🏼🧿

My girl, my heart, my little blessing ✨

Happy Birthday to us! 🌻

#thankyouGod #birthdaytwins #septemberbabies #virgowomen #forevergrateful

6th 🩷

5th 🩷

4th 🩷

3rd 🩷

2nd 🩷

1st 🩷

🙏🏼🧿✨ taken in London, United Kingdom by @soniyafit

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a month ago

What you see —> what you don’t see

Just because you can’t see it, it doesn’t mean it’s not there

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#chronicpainwarrior #rarediseasewarrior #chronicillnessawareness #invisibleillnessawareness #youdontlooksick taken in London, United Kingdom by @soniyafit

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7 months ago

Drop a ❤️ if you can relate… #iSeeYou 🥺🫶🏼

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#todaysquote #quoteoftheday #knowyourstrength #knowyourestrong taken in London, United Kingdom by @soniyafit

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7 months ago

I know I’ve been quiet again and I do feel bad but the truth is sometimes my body and mind just need me to step back.

I feel especially guilty for not showing up for my fellow zebras for Rare Disease Day this year. The 28th of February may be the official day, but for me and for all of us zebras it’s every single day.

I have 100’s of unopened DM’s, WhatsApp messages, missed calls and emails since the beginning of this year. Honestly, I’ve had zero energy and I’m struggling more than I’ve let on.

Alongside my ultra-rare condition, I’ve been dealing with treatment issues (old and new), an undiagnosed condition, a “maybe it’s this?”, and a new diagnosis too. Yep… apparently I’m collecting chronic illnesses.

On top of that, I’ve been battling severe health anxiety and near-daily panic attacks. It’s exhausting… mentally, emotionally and physically. The uncertainty. Being stuck in medical limbo. Fighting to be heard. Fighting for the right treatment. Fighting my own mind when health anxiety and panic start to take over. Some days I genuinely don’t know what to do with it all.

I’ve kept myself to myself because I don’t want to be a bother, even though I know I have friends and family who care deeply. But as I’ve said before… this really is a solo journey and I keep reminding myself that no one is coming to save me.

So right now, I’m channeling my inner warrior ⚔️

Healing.
Surviving.
Regrouping.

To my fellow zebras… I see you, even when I’m quiet 🤍

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#rarediseaseadvocacy #rarediseaseawareness #chronicpainwarrior #chronicillnesslife #rarediseasewarrior taken in London, United Kingdom by @soniyafit

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7 months ago

🩷🌹 Kiara-Rose 🌹🩷 #MyLittleValentine

#mummydaughterdate #happyloveday #galentinesdate #girlslovelove taken in West Sussex by @soniyafit

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8 months ago

Calm & Clarity: The Sacred Aroma of Palo Santo

Introducing our ethically sourced Palo Santo from the heart of Peru. A sacred wood traditionally used to energetically cleanse, calm the senses and bring gentle balance to your space.
A quiet luxury for intentional living.

Now available on our website ✨

🪵 100% Pure & Natural
No additives or artificial fragrance, only the warm, grounding aroma of authentic Palo Santo.

🪵 Respectfully Sourced in Peru
Hand-harvested from naturally fallen trees, honouring both the environment and local communities.

🪵 Ritual & Atmosphere
Perfect for meditation, mindful rituals or creating a calm, serene environment.

🪵 Curated Quality
Each stick is carefully selected for its purity, aroma and refined burning experience.

#palosantosticks #intentionalliving #mindfullife #cleanseyourspace #calmthechaos taken in London, United Kingdom by @soniyafit

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8 months ago

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9 months ago

“A note to my past self…” 💌 - Drop a ❤️ if you think your past self needs to see this too 🥹

🔁 Please feel free to share this with someone who could use a quiet reminder to keep going.

💾 Or save this for the days when everything feels a little heavy 🤍

#iSeeYou 🥹🫶🏼

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#notestomyself #littlereminders #healingjourney #youareenough taken in London, United Kingdom by @soniyafit

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10 months ago