Huntington’s disease can be a complex disease to live with and it can be even more complicated to live as a gene carrier. In those cases, it can be of great help to talk to others in the same situation. That’s exactly what Alice Rivières and her friend thought a few years ago.

Have you heard about AA? Alice Rivières and her friend found inspiration in the well-known support group structure and created their own special kind of group: an auto-support group for Huntington’s disease gene carriers.

Auto because there’s no professional to organize or lead the group. Everything related to the meetings are carried out by people directly affected by Huntington’s Disease: from figuring out where to meet, when to meet and what to talk about.

From 2 to 35

Over the last couple of years, they grew from 2 to 35 people. By contacting other gene carriers through facebook, Huntington’s associations and professionals working with the disease, the group steadily grew.

Now they meet every other week or once a month.

The freeing force of laughter

During the meetings they talk about Huntington’s disease and everything related to it – whether they should keep their gene status a secret at work, how they’re going to deal with the health insurance, how it is to be a boyfriend, wife or father and at the same time a gene carrier.

And they laugh. A lot.

Sometimes people don’t understand us, and we make jokes about it, Alice Rieveres says.

They also sometimes make cake and this year they made a picnic.

Other perspectives

Alice finds the support groups really empowering – and also inspiring: to see all the different variants of the disease and get advice and perspectives from people in the same situation.

She encourages other gene carriers to establish their own support groups: We always say: As soon as you are two, you are a group.

Alice is cofounder of
Dingdingdong (Paris)

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