Solidarity with SWANs

This post is about SWANs – not a long-necked member of the wildfowl family – although that might’ve been the natural assumption, given my penguin tirade the other day.

The SWAN I’ve been thinking about stands for Syndrome Without A Name, and for many disabled children and their families this is the only name they have for their disability.

Today is Undiagnosed Children’s Awareness Day and to celebrate it, I’m dedicating this post to all the children and families living with conditions that have no name.

A post on the Ouch Blog drew my attention to SWAN. I’d never thought a great deal about it and I certainly didn’t realise how common it was for people to have a disability but no diagnosis. About half the children currently having genetic testing through the NHS can’t be given a clear definition of their condition.

Lawrence’s mum Katherine Kowalski wrote the Ouch piece. Lawrence has multiple disabilities but no definitive diagnosis. Katherine describes how ‘We don’t know whether he will ever learn to crawl or feed himself, let alone walk, talk or live independently. We don’t even know whether he will see adulthood. And we don’t know why.’

Katherine’s post led me to SWAN UK, an organisation and community of families whose disabled children don’t have formally diagnosed conditions. To celebrate the first official UK Undiagnosed Children’s Awareness Day, SWAN UK have organised a blog hop and I’ve spent several hours reading the moving stories of families who are facing the unknown.

Reading their stories made me think about what my own diagnosis of Tourettes Syndrome’s given me. Knowing I have Tourettes means:

• I have a simple explanation for my disability that I can share quickly and easily with others.
• When I’m having a ‘ticcing fit’, however painful and distressing it might be, I know it’s just Tourettes, it will end and it won’t kill me.
• I have a two-word answer to put into the ‘Name of Disability or Condition’ box on a form, and I know anyone who’s interested in finding out more can type these two words into Google and find a huge amount of information.
• If I need help there’s a national support organisation, Facebook groups, and lots of opportunities to build friendships with people who have similar experiences to mine, and face similar challenges.
• My consultant’s a Tourettes specialist – she’s seen many other patients with the condition, has the opportunity to share and learn with other professionals, and can keep up with the latest research.
• I’ve been able to learn about my condition and take positive action to support others living with it.
• I’ve been able to challenge people’s misconceptions, celebrate the creativity of tics, and increase awareness of Tourettes amongst the general public.

I’ve written previously about the difference having a diagnosis made to me. But learning today about the challenges faced by so many people who have no clear diagnosis, I’m more appreciative than ever of mine, and the help, understanding and certainties it gives me.

While we may not be able to help people and families living with SWANs to find a diagnosis we can help raise awareness, acknowledge the additional challenges they face, and support the communities they’ve created.

To every child whose condition has no name, and their families, Happy Undiagnosed Children’s Awareness Day!

Please show your solidarity by sharing this post, by writing your own, and by supporting SWAN UK.

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