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Rare Diseases Need More Attention
October is Down Syndrome Acceptance month. November is Breast Cancer Awareness month. April is Autism Acceptance month. For many diseases and disorders, there is much attention given, and a lot of public support. This is good. I had a cousin with breast cancer, I have friends with Autism, so don’t get me wrong… I’m all for awareness and acceptance.
But, with all this attention being directed towards Breast Cancer month, no one remembers that November is also Epilepsy Awareness month. With all the attention going to Autism, nobody realizes that April is also a month to celebrate the lives and acknowledge the hardships that those who have special needs siblings go through.
And, rare diseases? They get almost no coverage at all.
One of my friends has a terminal, rare, genetic disease called MPS III - or Sanfilippo Syndrome. This disease makes her unable to talk, walk, or do basically anything without assistance. She is currently eleven, and her life expectancy is from 12-20. Despite this, she is constantly smiling, and loves to be around people. The chances of having a form of MPS are slim… but there are still many many children affected.
It is time for our government to pay more attention to rare diseases. Having a rare terminal illness shouldn’t be a death sentence… but with all the attention and media focused on more common diseases, it can be!
It is too late for my friend. There is no absolute cure for any type of MPS. But, if as a nation, we take more time to research rare illnesses, the next parent to receive this heartbreaking diagnosis will also be handed a list of treatments, and maybe even a cure.