There was a story that aired on 60 Minutes just this past Sunday.
I am guessing not many of you watched it, and I am not really a fan of the program myself. But there was a lot of hype about in the 'MSer' community, so I took the time to check it out.
It was about an Australian woman who travelled to Russian to have HSCT (Hematopoietic Stem Cell Transplantation) for treatment of Multiple Sclerosis with, what is claimed to be, successful results.
I haven't emailed it to 60 Minutes yet, and I don't know if I will, but geez it felt good to write it (self-satisfaction!).
Here is my response:
"I was shocked at your portrayal of Multiple
Sclerosis this past Sunday night.
Kristy is slowly dying is she?
Aren't we all?
I also have Relapsing Remitting Multiple
Sclerosis (Dx 2010), and I am NOT slowly dying any more than the next person.
It is NOT a fatal autoimmune disease.
Kristy is NOT confined to a wheelchair as
you claim in your online intro to this story - you show footage of her walking
around…albeit with obvious difficulty.
You also got the cost of her treatment
incorrect. It seems you doubled it!
I am assuming you began the story in the
worst possible light so it was to contrast sharply with Kristy Cruise's success
with HSCT.
I can assure you that this story has rocked
great hope in some MSers, but it has equally or even more so made a number of
us a little angry at how negatively our autoimmune disease was presented.
Many of us get on with life and do not let
MS overtake us. We manage and function within our limits, even when it is hard
or frustrating to explain to others and have them understand. We actually allow
other parts of ourselves to represent who we are!
We may forget why we walked into a room, or
the name of someone we just met. We even jumble words in our sentences just
like a drunk in a pub. Some of us have difficulty with that word on the end of
our tongue that refuses to roll off, but the majority of us do not share the
same type of memory loss as an individual with, for example, dementia (as
implied by Kirsty Cruise’s memory concerns). We all face some degree of cognitive decline,
it’s called old age.
Thankfully, none of my friends or family
appear to watch your program because if they did, I reckon I would be inundated
with questions about this ‘Russian Roulette’ story, and I also reckon they
would have developed a ‘fresh’ fear for my future as a person living with MS
(like they need to go through that again).
I wish Kristy Cruise all the best and a
very long period of remission. I also hope that any future stories you choose
to air about any autoimmune disease are more thoroughly researched so as to not
offend those successfully managing their situation.
That is all."
