Hello I'm Cait, from Scotland! I am pro-beard! This blog contains lots of music, scenery, rants and the occasional bouts of optimism! Featuring: Mumford & Sons, Laura Marling, Iron & Wine, Edward Sharpe & the Magnetic Zeros... (basically just look on the music page), Nerdfighteria (DFTBA!), lots of books and just yeah.
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October is Rett Syndrome Awareness month! It’s also Awareness month for a lot of other great causes, but Rett Syndrome is something you most likely haven’t heard of. It’s a rare neurogical condition which effects almost exclusively girls. The girls typically develop normally until around 6-18 months when they begin to ‘regress’, losing any skills they have gained. It’s often described as ‘the symptoms of autism, cerebral palsy, Parkinson’s, anxiety and epilepsy all in one little girl.’ Girls with the condition cannot talk, though research shows they are capable of understanding much more than they can express. Only around half can walk. Almost all have no functional hand use, often experiencing repeated uncontrollable hand movements. Other symptoms include seizures, breathing difficulties, scoliosis and digestive issues. Girls are often very sociable, but find it almost impossible to commmunicate. Currently there are virtually no treatments. But, research has shown that Rett Syndrome can be reversed in mice, there is no brain damage! Right now, research is continuing with the hopes of developing treatments and even bringing this reversal to humans. I’ve been looking into Rett as a project for school and as part of that I interviewed the mother of a local girl with the condition. It was really amazing to hear about everything her daughter had to deal with on a daily basis, and how they have all adapted and remain hopeful and patient. But what shocked me most was that the woman said there was very little professional, never mind public, awareness of the disorder! This delays diagnosis for many girls and without awareness, there is little funding for research. If the public aren’t interested, then money doesn’t get raised and grants rarely get given. We could see this be the first curable neurological disorder, and give these girls their freedom.