Activity Stay: Louise's Blog

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16 Aug, 2019
  • Teens

Activity Stay: Louise's Blog

Hi, I'm Louise. I'm 18 and I have a rare incurable genetic disorder called Fanconi Anaemia (FA).

FA leads to cancer and bone marrow failure. I was diagnosed at the age of 6 with FA and Aplastic Anaemia (bone marrow failure). In September 2012, I underwent a bone marrow transplant from an unrelated donor. I was isolated in hospital for months, and was not allowed on public transport, or in busy areas, which was difficult in central London.

I will always need regular monitoring for cancers which involves many hospital appointments throughout the year.

Isolation was something that restricted how I lived my life for a long time. I couldn’t socialise or attend school which meant I was really missing out. After not being around people my own age for a long period of time, I almost forgot what the social norms were outside the hospital.

My confidence was knocked because some friends treated me differently and wouldn’t invite me out as they assumed I’d always be too exhausted to do anything.

Going along to the Teens Unite events were something to look forward to. I could meet new people who shared similar experiences to me whilst trying something new.

Meeting up with friends can be difficult when you have to miss out on regular outings. This is why Teens Unite is helpful. You can meet new people and they understand if someone isn’t available or feeling up to something.

The Activity Stay enabled me to be myself around others. I feel like I’ve made lifelong friends on the Activity Stay. I didn’t realise one week could make such a difference.

I signed up to the Activity Stay as I met people at previous Teens Unite events that highly recommended it to me. I wasn’t sure how a week full of activities would affect my energy levels, but I didn’t once feel pressured into doing anything I wasn’t comfortable with, which really boosted my trust in the staff.

My favourite part of the Activity Stay was meeting new people who I can now call close friends. When you share the familiarity of spending time in hospital it can bring people together, as you are able to relate to each other.

I would encourage anyone who has the opportunity to go to the Activity Stay to sign up because it’s changed my perspective of what brings people together. The activities aren’t something you’d get the chance to do normally either so you’re able to try or experiment with new things.

Before the Activity Stay I was feeling somewhat lonely as my college friends are at work a lot so I don’t get to see them often. On the first day I already started to feel more positive as I started to talk to people.

After the Activity Stay I feel like I’m capable of so much more than I previously thought. I'm very lucky to have so much support from Teens Unite. 

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