Last November, we launched our Community Ambassador programme. Our new Ambassadors are doing a great job supporting the Inherited Metabolic Disorders community in their local areas, enabling us to reach many more patients and families. They are also helping us spread the word by raising awareness and fundraising. Today, meet our Ambassador, Hannah Smith!
Hello, my name is Hannah Smith and I’m 27 years old.
I was born very poorly but finally diagnosed with OTC Deficiency at 14 months old.
I was constantly in and out of hospital and missed lots of school. Things were made worse when I was diagnosed as diabetic when I was 11 years old.
I always tried to keep a positive attitude but often felt like nobody understood how I felt, as I didn’t know anyone else with OTC Deficiency. So, I want to share my story and help others not feel so alone.
In 2017, I was informed I would need a liver transplant, as my OTC Deficiency had become unmanageable. In June 2018, I had a liver transplant and have so far been very healthy and happy – enjoying my new life – whilst on a mission to spread awareness of both Inherited Metabolic Disorders and organ donation.
Why did you want to become a Metabolic Support UK Community Ambassador?
To spread awareness and share my own experiences, to hopefully allow others to relate and not feel isolated.
Bake sales, 5k fun runs and through my social media page on Instagram @liveandletliver if you wish to follow!
Where is the strangest place you have raised awareness of Inherited Metabolic Disorders?
I think the strangest place would be at my own wedding!
What’s the hardest thing about living with an Inherited Metabolic Disorder?
The hardest thing would be feeling like people don’t understand. Since I had my liver transplant, it has been so refreshing to hear of other people’s experiences of OTC Deficiency.
In the IMD community, who has had the greatest impact upon you?
My Consultant and Dietitian.
What’s in your fridge?
Strictly Come Dancing, I’m a Celebrity, or Great British Bake Off?
Strictly Come Dancing.
What was the last film you watched?
The last film that I watched was “Blended”.
Caribbean coast or snow topped mountains?
I would be by the fire in the garden with my husband and dog.
Favourite comfort food?
Cheese and bacon burger.
What would the theme tune to your life be?
“This is Me” from the Greatest Showman.
Who do you follow on Twitter?
I don’t use Twitter.
If you or your child lives with OTC and would like to connect with Hannah, please get in touch with Team Metabolic’s Julie on email@example.com