Where are the 98%? #Undiagnosed

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Swan UK – Syndromes without a name – supports families with undiagnosed children. Currently Swan UK has a membership of around 2000 families – this is fantastic and the group is growing. However we know that around 6000 children are born every year who remain undiagnosed, which equates to over 100,000 children in the UK.

You can help us to find the 98% – those families currently walking this journey alone, who are unaware of the support available to them.

Why do we want to find them?

Do you remember being pregnant for the first time? That sense of joy, being overwhelmed and excited all at the same time. Do you recall how it felt to meet up with other pregnant ladies / expectant fathers at the ante natal classes, or to talk to those already with kids – the comfort in knowing that it is normal to feel exhausted, talking to others who have experienced the joy of the first kicks, the worry that comes with parenting.

Think back to when your baby was born – looking to the midwife for reassurance, googling the tiniest symptom for information, checking their weight against the little red book – the baby bible. The first day at nursery or school when there was not a dry eye at the gate – all of the parents in the same position.

Having a reference group is really important, others who can empathise and be around to support through the good and the bad.

The loneliness of being Undiagnosed

Now imagine that journey of pregnancy, being a first time parent, seeing your child grow but without that reference group around you. Imagine being the only one who was or has ever been pregnant. Imagine looking to the midwife for reassurance and instead getting a puzzled look. Imagine standing alone outside the school gate on the first day.

This is how it felt to us before we found Swan UK. We were alone, isolated and desperately searching for answers. We still don’t have many answers but we do have place to go, a safe haven of others who understand how it feels. A group who face similar and altogether different challenges but who support each other through every step and together celebrate the good times.

A previous blog describes how it feels to remain undiagnosed:https://theworldofgorgeousgrace.com/2017/04/24/welcome-to-no-mans-land-undiagnosed-2

How Can Swan help

No child or parents journey is ever the same and each and every Swan is unique, however the value of having a virtual group around you, for support if not always answers cannot be overestimated.

Swan UK offers a range of ways to support families:

  • An active Facebook page – the source of a wealth of knowledge and 24/7 support from others in the network
  • Advice on genetic testing and the latest parliamentary as well as medical updates
  • Regional groups – both virtual and real life get togethers so we can meet others in a similar position
  • Funded days out that would otherwise be unobtainable to most families – including support for those who need practical help on the day
  • Campaigning to raise awareness and ensuring the undiagnosed and not forgotten

Undiagnosed Children’s Day 2017:

This years Undiagnosed Children’s Day is scheduled for 28th April and we would like you to help us find the missing 98%. Please share our blogs and stories on social media and help to find those who do not yet know how we can help.

How to Donate:

If you would like to make a donation to Swan UK you can do this via Just Giving or Virgin Money Giving or text SWAN11 plus the amount (up to £10) to 70070.

2 thoughts on “Where are the 98%? #Undiagnosed

  1. I wish I had known about Swan much earlier. The first 7 or 8 years of not knowing was incredibly painful, especially when his health was so fragile. Groups like Swan are very important.

    Like

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