An open letter to my MP: let’s talk about undiagnosed conditions

Dear Mr Godsiff

How are you? I am so glad you retained your seat for Birmingham Hall Green at the recent election and you had my vote again.

Today I am joining with a group of bloggers to write open letters to our MPs to ask them to join the All Party Parliamentary Group (APPG) on rare, genetic and undiagnosed conditions.

My child has a genetic condition that doctors have so far been unable to identify. Living without a diagnosis is very isolating. It is hard to answer questions about my child and it can be very difficult for me to get my child’s needs taken seriously.

Gabriel is now four and I do not know what the future might hold for him – will he walk? Will he talk? Will he have a shorter life expectancy?

 

Can you imagine how hard it is living with such uncertainty? That’s why I’m asking you to join this APPG and to use the group to press for improved diagnosis opportunities, which in turn may unlock access to effective medical care and treatment for my family, and others like us.

Gabe.hospitalMy boy started reception class this week at a local special school and has come a long way from that poorly boy that started life in the high dependency unit.

He likes giggling at coughs and sneezes and is the fastest bum shuffler in town. His favourite TV character is Iggle Piggle and he launches into a funny little dance when anything by Bruno Mars comes on the radio (he has great music taste I think).

He is a hoot and we are so proud of everything he has achieved thus far, but he still has such a long way to go and we rely so much on Government care and support.

The key aims of the APPG will be to increase awareness of rare, genetic and undiagnosed conditions in parliament and help to ensure that patients and their families, families like mine, who are affected by these conditions, have access to the appropriate care and support.

Many of these rare and genetic conditions are progressive, meaning that the health and quality of life for affected individuals will continue to deteriorate throughout their lives and many of those affected will die prematurely. The vast majority cannot be cured and most have no effective treatments.

I am unlikely to be your only constituent whose child is affected by a rare, genetic or undiagnosed condition. It is thought that about 50% of children with learning disabilities and 60% of children with multiple congenital problems do not have a definitive diagnosis to explain the cause of their difficulties.

Rare and genetic conditions are a significant cause of illness – 1 in 17 people will be affected by a rare condition at some point in their life and 4 in 100 babies in the UK are born with a genetic condition.

It is also estimated that 6,000 children are born a year with a genetic condition that will remain undiagnosed.

The charity Genetic Alliance UK will be providing secretariat to the APPG, so please get in touch with them by emailing emily.muir@geneticalliance.org.uk or by calling 020 7704 3141, so that they can provide you with additional information.

I hope that you will join the APPG and dedicate a small fraction of your time to what is an exceptionally important subject.

Thank you for your time Mr Godsiff

I look forward to your response.
Yours sincerely,

Alison

Gabriel’s mum

Update: We got a letter from our MP’s office to say he has joined the group. How epic is that. 

4 Comments on An open letter to my MP: let’s talk about undiagnosed conditions

  1. Wry Mummy
    September 16, 2015 at 11:32 am (3 years ago)

    Brilliant letter, Ali, and how awesome is that that he joined the group? I'm so pleased that he did – I don't see how he couldn't with your amazing letter. I hope it brings real change and research towards a diagnosis honey. xx

    Reply
    • Alison
      September 30, 2015 at 7:28 am (3 years ago)

      Hopefully future generations will get quick access to all the amazing gene therapy moving through – that will change the world. Small steps hey xx Thanks Jess

      Reply
  2. Jude Hurrell
    September 16, 2015 at 9:32 pm (3 years ago)

    Wow, those stats are such an eye opener. I had no idea so many children had undiagnosed conditions. This is a really good letter that deserves to inspire change and get result. Fingers crossed you get the response you and Gabe deserve. xxxx

    Reply
    • Alison
      September 30, 2015 at 7:27 am (3 years ago)

      Thanks Jude. He signed up so we are over the moon. Hopefully lots of progress soon x

      Reply

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