Can you help us find the 98% #undiagnosed? — Scope | Disability forum
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Can you help us find the 98% #undiagnosed?


This Friday is Undiagnosed Children's Day and I am supporting Swan UK to raise awareness about the support they can provide. Are you the parent of an undiagnosed child or do you know someone who is? You may find this of interest. 

My daughter GG is undiagnosed although we have lots of conditions diagnosed e.g. Epilepsy, learning disability, squints etc. We do not have a unifying diagnosis and are on research programmes which are ground breaking in genetics. Many Swans are diagnosed with autism but have lots of other challenges too. No 2 Swans are the same! 

GG's mum

Where are the 98%? #Undiagnosed
Swan UK – Syndromes without a name – supports families with undiagnosed children. Currently Swan UK has a membership of around 2000 families – this …


  • Alex
    Alex Scope Posts: 1,305 Pioneering
    Thanks for sharing @ggblog44, it's quite an incredible stat. Let's hope the awareness campaign works.
  • ggblog44
    ggblog44 Member Posts: 8 Listener
    Thanks for reading. It is a lot of people to track down! 
  • Nystagmite
    Nystagmite Member Posts: 596 Pioneering
    I was a SWAN! I thankfully grew out of one of my conditions (epilepsy) but was left with memory problems. I was also born with an arachnoid cyst which was eventually diagnosed in 2012. I was also born with an eye condition which I was diagnosed with at the age of 20. Unfortunately for me, there's no known prognosis. I'm slowly losing my colour vision and was given the good news (on my birthday of all days) that my vision has finally stopped getting worse.

    I was also diagnosed with Autism in 2012. But upon talking to my parents, it had been obvious for years. They had a huge fight getting believed that my had Autism and wasn't just a spoilt brat and they had a huge fight with failing to get me diagnosed. (everything was blamed on my vision; but no-one could ever explain the vomiting - it was eventually discovered it was due to having epilepsy. Some people vomit / soil themselves during seizures)
  • ggblog44
    ggblog44 Member Posts: 8 Listener
    Wow, that's a lot to handle and typical of Swans, loads of different issues which appear unconnected. I am pleased that you grew out of epilepsy, seizures are so unique to individuals. Also great that your vision is no longer deteriorating.

    There is a lot of coverage of the challenges of getting a diagnosis for autism, it shouldn't be so hard. There is a Swan group for adults if you were interested check out the website.

    Thanks for commenting. GG x 
  • Nystagmite
    Nystagmite Member Posts: 596 Pioneering
    Thanks. I did find out last year that I've probably been diagnosed with the wrong eye condition. Frustrating. 
  • ggblog44
    ggblog44 Member Posts: 8 Listener
    Very frustrating indeed...


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