*Disclaimer.. I haven’t actually watched the episode myself and after what I have read I don’t intend to. My comments are based on what friends have said happened and the synopsis.
The diagnosis was given as an alternative to the original diagnosis of Osteosarcoma and was described as not being a Cancer like first thought. We all know this is incorrect and LCH is a rare Cancer and after years trying to get it classified correctly we are sick of having to fight those ‘at least it’s not Cancer comments’. It is CANCER and AUTOIMMUNE so it is the ‘honey badger’ of diseases and does whatever the hell it likes. It is not limited to blood, bones or skin, it can damage what it wants essentially...
It was also described as being easily treatable with prednisone which is a steroid pill. This is also incorrect as LCH requires Chemotherapy and is often not easily treatable with patients requiring multiple types over many years or even gene therapies for persistent recurring cases. Sufferers may need organ transplants because these rogue cells DESTROY the body and it isn’t always reversible. Sadly you can also can die from this disease whether or not people want to hear that.
But why such upset over a TV show? Lots of medical shows are inaccurate after all..
For those of us wanting awareness, it brings the wrong type of awareness. It marginalises our struggles and makes patients, and those caring for people with this disease, look like ‘hypochondriacs’ or liars. It creates a ‘my disease is worse than your disease’ mentality and downplays the downright hell our children (and adults sometimes) have to go through.
There would be uproar if Leukaemia was referred to as the ‘easy’ Cancer on a TV show because everybody knows what it is and that it can kill. But because nobody has heard of this disease, our concerns are met with comments such as ‘calm down’ and ‘it’s not that serious get over it’.
And as a parent of a child that nearly died REPEATEDLY because this CANCER destroyed his lungs I can tell you it damn well is serious!
#RANTOVER
