NEW: My Addison's Disease Journey
That Tilly Rose That Tilly Rose
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 Published On Aug 7, 2021

I’m using this channel to show more of #LifeBehindTheLens ➡️📸 The ‘not-so-perfect’ life often not posted on social media…Life with a chronic illness.

This video is all about my journey to being diagnosed with Addison's disease/adrenal insufficiency.

Adrenal Insufficiency/Addison's disease is a rare disorder of the adrenal glands, pituitary or hypothalamus where the body is unable to product cortisol, a hormone required to live. Patients with AI are steroid dependent and run the risk of 'Adrenal Crisis' where the body requires more cortisol than the body can produce and goes into shock. If untreated with a life-saving emergency steroid injection, this can lead to a coma and death...

Unfortunately, Addison's Disease often goes undiagnosed for a long time and patients don't reach a diagnosis until their first crisis...this is what happened to me.

For more information of Addison's/AI: https://www.addisonsdisease.org.uk/

FAQ:

Who are you?
My name is Tilly and I'm the original founder of @thatoxfordgirl (www.thatoxfordgirl.com). I got into and graduated from Oxford Uni whilst living with active Tuberculosis.

What's your health situation now?
I started TB treatment and finally got my life back! But in 2018 I was rushed into hospital in a life-threatening adrenal crisis. I have since been diagnosed with Addison's Disease/Adrenal Insufficiency. Sadly, the medics have struggled to get my condition under control. They now believe the TB has returned and is putting my adrenals under huge pressure.

What's daily life like now?
Daily life is a balancing act. I am on huge doses of steroid, taking tablets all through the night, as well as a hydrocortisone pump injecting cortisol through a cannula into my tummy 24/7. I have also recently recommenced Tuberculosis treatment, a combination of chemotherapy and antibiotic treatment.

What's the aim of this channel?
To raise awareness for all those superstars out there living with long term health conditions. To give you an insight into life with Addison's disease, Tuberculosis and to show you that my story is proof you mustn't give up. This is a channel focused on positivity, patient stories and coping strategies I've learnt along the way!

Instagram: @thattillyrose   / thattillyrose  

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