SWAN UK member reaches out to families at Alder Hey

Hi, I’m Emma Mangan. I am a mum of four. William is eleven, Alfie is eight, George is two, and my SWAN Nellie is five.

I have been involved in doing a stand for SWAN UK at Alder Hey. The purpose of the stand is to reach out to families who may have undiagnosed children, to inform professionals about SWAN UK and to get SWAN UK some publicity.

I initially got involved with the stand on Undiagnosed Children’s Day 2016. I am a registered paediatric nurse. I worked for ten years on ICU at Alder Hey prior to having Nellie so I have lots of connections to the hospital aside from it being Nellie’s main treatment centre. I feel very comfortable there. I have found being involved a really positive thing – it’s lovely to catch up with other members while doing the stand. I have found all the members of the public and the professionals I have come into contact with through the stand to be very interested in SWAN UK, eager to know more, and very positive.

I feel a sense of pride being involved – it feels like I am able to give something back to a network that has given me (and my family) so much support and information.

Being undiagnosed is a very lonely situation to be in. I have felt isolated in the past and cut off from ‘normal’ everyday life. SWAN UK has given me a lifeline (and I am not just saying that) through their online member support forums, days out, meetups and information stands.

Therefore, it’s very easy to talk about SWAN UK and what they represent. As long as I have dates in advance it’s quite easy to arrange to attend Alder Hey to participate in these information stands – three of my four children are in school and George is in training to spread the SWAN UK message! We have been members of SWAN UK for over three years and I couldn’t imagine not having them in our lives. I look forward to taking part in SWAN UK events – it gives me a purpose and something to do which I enjoy and it’s something I feel passionate about. It is also an opportunity to be social which is so important when you feel isolated.

SWAN UK has made me brave!

I would encourage any member to take part in an information stand and represent SWAN UK. It is a very informal easygoing experience where you as a member can inform and meet potential new members and professionals.

Sometimes more importantly for us parents and carers it’s an opportunity to be social by catching up with other SWAN UK members (and if you come along to Alder Hey I always bake cakes!)

Our next stand at Alder Hey will be on Friday 28 April, which is also Undiagnosed Children’s Day!

Are you interested in helping out on a stand for SWAN UK like Emma? Email: [email protected]

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