My name is Alissa Riezebos-Seijbel and I am the creator of the website porettiboltshausersyndrome.info.
When I was a little girl, about 2 years old, I was diagnosed with Ocular Motor Apraxia. It was the year 2000 and all my parents received was a little bit of text on a paper, that they had found somewhere on the internet, about this diagnosis.
Times have changed, and we have a lot more possibilities to find and spread information around the globe.
When I was 17, I got diagnosed with Poretti Boltshauser syndrome. It was a bit random, because I was sending my MRI to the University of Washington to see if I could help them with a research about the Ocular Motor Apraxia mentioned above.
A lot of things made sense, it was like a puzzle was complete. My whole life I had all these loose diagnoses, and this one could bind it all together, and give it one name.
There was almost nothing on the internet about Poretti Boltshauser syndrome. I found a support group and after I did an AMA (Ask me Anything) on Reddit, I found that people started contacting me. Their child had PBS, just like me! I figured I needed a website, for all these people who wanted to have more information.
Now, every month we get more people in our Facebook support group. They mention that they found my website and clicked the link to the group. I am thrilled and filled with pride to make a difference in people’s lives.
But I think there is more to be done. For instance, there was no Wikipedia page about PBS since there was a big lack of sources. So I made one now, with a little bit more sources than there were before. And I don’t want to stop there. People should know that they are not alone. Because they are not!
I am in the process of officially establishing this foundation, and when I do, I can start making an even bigger difference in people’s lives.
– Alissa