The story of Stephanie
There are two things I detest to hear from a health professional, one thing that should put them out of the job, and a fistful of rare things that we were told we couldn’t have. This is the story of my family and me and the preconceptions in health care about rarity.
I have a very big family big enough that I sometimes miscount. We are a family of rare diseases and conditions. Some of these rare conditions have thankfully been caught by healthcare professionals who took the time to listen and consider the presentation and in one circumstance where this didn’t happen it cost the life of one of my brothers.
I won’t go in to them all but being told that this is a rare condition means nothing to me anymore. Just because it is rare doesn’t mean it can’t be that condition if that is what all evidence points to.
Being told you can’t have that because… “But you are too old”. “Your too young to have cancer.” “It’s just a strain from over exercising”. “I don’t know what it is so just go home and rest”. “The Hosptial isn’t a convenience stop”. “I know what I’m talking about, im the health professional your not”.
When it comes to medicine I have learned to take the guilty until proven innocent approach or the malignant until proven benign approach. I was once told in school that the novel I was reading was too fantastical and wouldn’t happen in real life so I had to ask the teacher are there fighter pilots in the world? Yes. Ok. Are there fighter pilots who crash and/or get shot down? Yes. Are there terrorist attacks in the world? Yes. And would people get injured and maimed from such things?. Yes. Can blind people fall in love with people who are horribly burned? Yes.
So why is it so fantastical that an Israeli fighter pilot who got shot down, survived but burned, would fall in love with another Israeli woman who was blinded by a terrorise attack? It just wouldn’t happen apparently.
So can someone get back pain? Yes. Can someone lose all feeling from their waist down?. Yes. can someone lose all control of bowel and bladder? Yes. And could it be indicative of something serious. No of course not it’s just sciatic pain he’s too young and healthy to have something serious.
Only happens to be 30 years old with rhabdomyosarcoma in his spine and leg. A childrens cancer. A rare cancer. And it wasn’t seen till it was too late.
Just because something is rare doesn’t mean you can’t have it.