Talk to relatives

We know it can be hard to talk about Dutchtype CAA with family members. People tend to deal with it in very different ways and some don’t even want to hear about out it at all. If you have a need to open up the conversation, here are a few tips: 

1. Make sure you prepare your family member for the topic of conversation

You might want to send them a message upfront, asking if they are willing to talk to you about it. It might help to be understanding of the sensitivity of the subject and approach it saying “I know it is hard to talk about, I feel the same, but….” or anything in your own words that feels right.

2. Be well-informed and prepared

It might be difficult to talk about DCAA with family members, especially those who have a hard time being confronted with DCAA. If you want to open up, it could be helpful to make sure you are well-informed about DCAA and it's consequences. It can also be helpful to consider what you do and do not want to share, and how to put that into words, before going into the conversation.

3. Ask us for input 

We are very happy to answer any question you need answered before having a conversation with family members. And remember: there are no stupid questions.

4. Prepare for your children’s questions

The best way to approach a conversation about DCAA with your kids is to be as open as possible. Make sure you tell them what DCAA is, how it has affected you and your life, how it may affect theirs and answer their questions to the best of your ability. If they have more questions, you can refer them to the research team (Samantha Gardener), our patient advocate (Sanne van Rijn) or neurologist (Daniel Clarke). We can also help them with questions around genetic testing.

5. Refer family members to the patient association's website

www.hchwa-d.nl/en/ is the website of the patient association. Here they can find lot of information about the disease, it's effects, genetic testing, family planning, finding support and healthcare, etc.

6. If you are part of DIAN and/or TRACK DCAA, tell them about your experience

First of all: thank you! Your participation means a lot. It will help others to know what they are signing up for, if you tell them from experience what it is like.

7. If you find it hard to talk about DCAA and feel burdened about talking to family members, make sure there is someone there to support you 

If you have a backup, use them! Is there a partner, a sibling or maybe one of your children you feel very comfortable with, who can support you? Ask them to be part of the conversation.

8. Connect with family members who feel the same way

Although not all family members will be in the same place when it comes to DCAA, there might be someone close to you who is open to a conversation. Connect with them.