Thursday, January 08, 2009
Pediatric multiple sclerosis. Now there's a phrase you don't hear every day. But, sadly, it does exist.MS, for all its variations and symptoms that come and go, is an extremely difficult disease to confirm in any case. Because MS is most often diagnosed in people over the age of 30, pediatricians gen...
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Mandy,
I'm so glad that you discussed this. I know that this very question has come up on site a few times.
I have been in touch with a 16 year old girl living in a country which doesn't typically see MS at all. In fact, even her doctors do not know what exactly to do with/for her.
She described to me how she feels like a "freak" and a "weakling", not able to even run with the other girls because she'd just fall down. She even wondered if she should drop out of school because of her difficulties.
Imagine not understanding your disease and being deemed a one-of-a-kind because literally there are no others like you within the borders of your country. That's a hard thought.
I turned her on to some folks online with whom I thought she could talk about things. I hope that she is doing well.
Thanks for bringing up the topic. This had been bouncing around in my head too.
That's a heartbreaking story. I'm sure that the information you provided to her was of some comfort. That's what I love about this site -- we reach out to help, just as others have done for us.
Children with MS is kind of a new topic in the world -- hopefully, as research continues, these children will find the help they need.
I wish that I could say she came through here, but she is unrelated to the couple of folks asking about MS in children/teens. Actually, I accidentally found her in one of my periodic internet searches for additional bloggers talking about MS.
She was completely unaware that there were so very many of us in the world, or that people were talking about living with MS online. I hooked her up with some folks closer to her own age and who (I knew through their writings) would appreciate her concerns.
That's the type of stuff online which brings me the greatest personal pleasure. It is that reaching out to help which makes all of this online activity meaningful.