UCD 2021 – Emma’s story

Hi, I’m Emma Mangan. Peter and I are parents to five children: William 15, Alfie 12, George 6, Arthur three, and our swan, Nellie who is 10.

Emma Mangan family in inflatable frame

We have always found being involved with SWAN UK a really positive experience – pre COVID it was always lovely to catch up with other members at events – opportunities to be social is so important when you feel isolated.

We have been members of SWAN UK for eight years and we couldn’t imagine not having them in our lives.

Obviously in recent times physically holding events has been put on hold but SWAN UK have continued to support its members by hosting virtual events to keep us socially involved. They have held events including quizzes and discos for our children, which they have loved. We look forward to taking part in future SWAN UK events and would encourage any member to get involved and represent SWAN UK.

We have also, through SWAN UK, been lucky enough to have visited Parliament as guests of our then MP to hear about the work of the APPG on Genetic, Rare and Undiagnosed Conditions.

Being undiagnosed is a very lonely situation to be in. We have felt isolated in the past and cut off from ‘normal’ everyday life. SWAN UK has given us a lifeline through their online member support forums, days out, meetups and information stands.

We feel a sense of pride being involved with SWAN UK – it feels like we are able to give something back to a network that has given us so much support and information.

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