Adults with Joubert syndrome

One of the topics I get asked about the most, or that people bring up my name in relation to, is Joubert syndrome and adulthood. What's it like being an adult with JS? What does the future hold for my child? Are there any people with JS out there over X age?

I can relate to their curiosity, since this was what I was most interested in finding out upon being diagnosed with Joubert syndrome.

That may sound strange coming from someone who was diagnosed at 25, but it's true. I had no real interest in issues like genetics, and felt confident that my doctors were handling the medical aspects of the syndrome, so the first research I did was to try and find others like myself.

Being a rare disorder, it took a little while, but eventually I started to find other adults out there with Joubert syndrome.

Since being diagnosed, I have met many adults with JS of all different ages and ability levels from all over the world (thanks Facebook!). Some have gone to college or university, some work or are otherwise involved in their communities, some live on their own, have travelled internationally, and a few have families of their own.

Over the last couple years, several of those adults have even become pretty good friends! (Again, thank you Facebook). This is one of the reasons why I enjoy attending the Joubert Foundation's conferences every couple of years. It's probably the only time and place where I can meet others like myself in person.

So, yep, there are loads of adults with Joubert syndrome out there who all seem to be doing the best with what they've got. As for what the future holds for younger kids with the syndrome? Well, that's up to the individual and those around them. Fortunately, there are many good examples out there to draw from.

Cheers!