A diagnosis of Down syndrome in any form can be a huge shock. You might be overwhelmed, worried about what happens next or thinking about the impact on your life or the life of your loved one. Here is some information that could be a good starting point.

Just been diagnosed?

Being told that you or a loved one has Down syndrome is a huge shock and a diagnosis is life changing from the moment it’s given. You may feel anxious and uncertain about what will happen next. Your doctor will explain the details of the diagnosis and what tests and treatment you may need, but it can often be difficult to take in everything that’s being said.

Some people may find it helpful to have some statistics, and whilst specifics can give you an idea of what may happen, doctors can’t say for certain what will happen to you.

How we can help

The IMDSA team exist because of a passion to support and nurture families living with mosaic Down syndrome, and many of us have personal experience of receiving a diagnosis. By getting in touch with IMDSA we can give you information based on a wealth of knowledge and help you understand and become better equipped for the journey ahead.

Knowing what financial and emotional support is available can make the future seem a little less daunting. You can contact one of our support specialists, who will be able to answer any of your questions about living with Ds.

Relationships and work

If you or a loved one has recently been diagnosed with Ds, you might be wondering:

• how this will affect your family and relationships

• how to tell people

• how to cope with work and financial concerns

We're here for you every step of the way, and there are many ways we can help.

You can contact one of our team who can answer any of your questions about mosaic Down syndrome. They can talk to you about any aspect of living with Ds, such as eating problems, coping with side effects, talking to people, and managing your work and finances. They can also tell you where a local support group is, or how to access a counsellor. Or you may want to join our online community where you can share your experience and exchange tips with others.

It’s likely you’ll have many different feelings during this time and the team at IMDSA are here to help so please get in touch. Contact Us