October 10th 2020 is World Mental Health Day! I would like to share something with you about this topic. Mental health is something that is sometimes overlooked, or downplayed. I love a subreddit called “thanks I’m cured” where people post things or quotes that are examples of toxic positivity. Meant …
I will talk some about how I felt after my diagnosis, and what someone said to me that made me see it all a lot clearer. This is about how I felt and it wasn’t good. Please note that I have seen a psychologist to get that all sorted out …
Maybe a heavy subject, but the thoughts a child or a parent who gets this diagnosis can be exactly these words. Why me? Why my child? Poretti Boltshauser Syndrome is when both parents have one defect LAMA-1 gene. When they get a child, there is a 25% chance of the …
My name is Alissa and I made this website to help people that are looking for info about Poretti Boltshauser Syndrome. I got diagnosed myself in 2016 and found it very confusing that there was not much information available. They always say: be the change you want to see, so …
