New to DDX3X

You’re here because you’ve either been recently diagnosed, or suspect something.

You probably feel worried after having searched on Google and are asking yourself questions like: will my child ever talk, what do I tell them and when, and will they have a happy and normal life?

You’re probably wondering if you’re the only one, why did it happen to you, and what do you do now?

‘This is just a quick message to say you’re not alone, your life is not over, and this is a big DDX3X hug for reassurance.’

Even though DDX3X syndrome is a rare condition there are lots of people who are impacted by it across the world and we can help you get in touch with the global community and those closer to home in the UK and Ireland.

We don’t have all the answers, and we can’t fix things or make things go away, but we are here to help and support. We have all been through what you are now going through and we can share our own experiences.

Here are some steps of what you might be going through or may need to go through, maybe having entered at different points or gone through them in a different order…

New to DDX3X

You’re here because you’ve either been recently diagnosed, or suspect something.

You probably feel worried after having searched on Google and are asking yourself questions like: will my child ever talk, what do I tell them and when, and will they have a happy and normal life?

You’re probably wondering if you’re the only one, why did it happen to you, and what do you do now?

‘This is just a quick message to say you’re not alone, your life is not over, and this is a big DDX3X hug for reassurance.’

Even though DDX3X syndrome is a rare condition there are lots of people who are impacted by it across the world and we can help you get in touch with the global community and those closer to home in the UK and Ireland.

We don’t have all the answers, and we can’t fix things or make things go away, but we are here to help and support. We have all been through what you are now going through and we can share our own experiences.

Here are some steps of what you might be going through or may need to go through, maybe having entered at different points or gone through them in a different order…

One

You may have a child who has intellectual disability and global developmental delays who may not be talking or walking in line with their peer group.

Two

You have probably had discussions with your GP and been referred to or seen other medical specialists.

Three

You may have been referred to a Genetics Centre for a consultation or a genetics test, or are thinking about whether you should be. This leaflet can help you with what to expect and questions you could ask.

Four

If you have been tested you may be waiting for the results and to speak to someone about the results and what they mean.

Five

You may have been misdiagnosed several times or may still be undiagnosed but have DDX3X-like symptoms.

Six

You may have had your diagnosis confirmed and are now thinking about what to do next and how to manage the condition. This leaflet can help you to think about what happens next.

Unfortunately there are many uncertainties with DDX3X as there are a wide range of issues and severity. Not enough is known about it yet, but things have the potential to improve as more diagnoses are made and more research takes place.

These are some first steps to think about doing…

  • Join the UK Private Facebook Group and the American Private Facebook Group to meet people, ask questions, get information and share experiences.
  • Follow our Public and Private Facebook pages for information and updates.
  • Read the information on our website, especially the What is DDX3X? page and the DDX3X Unique leaflet.
  • Talk to your GP or paediatrician and tell them everything you think they should know, and be persistent and firm about what you need and when.
  • Work out with your GP or paediatrician who your child should be seeing and find good supportive specialists for your needs e.g. speech and language therapist, occupational therapist, clinical geneticist.
  • Start logging everything that happens so that you can refer back to the medical history when needed.
  • Consider what you need to do about routine screening and health checks.

There are lots of things you will need to learn and begin to cope with, but get in touch and you’ll realise you’re not on your own.

Origin of text PTENUKI. Reproduced with kind permission of author Ian Stock.

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