Don’t touch her, that disease is too rare for sympathy

when you’ve given up
When no matter what you do it’s never good enough
When you never thought that it would ever get this tough, that’s when you feel my kind of love

Emile Sande – my kind of love

The one problem with getting another person’s empathy is that this disease is so rare, the chances of finding someone to sympathise with the same disease would be a miracle let alone facing the same challenges. Because it’s rare in Ireland, not even doctors show interest in finding preventative treatment. The government have no interest to financially support or even provide a support centre in Ireland.

Society today lacks empathy and consideration for others; I say if there was enough demand for attention to rare diseases, the government would have to listen. We live in a selfish society, globally. As long as you’re not directly affected, there is no motivation to help somebody else.

Histiocytosis is often misdiagnosed; depending on whether or not it’s life threatening, treatment is so important for lowering the complications associated or death. What if a loved one of your was misdiagnosed and treated for the wrong illness. If they turned out to have some sort of illness related to Histiocytosis but it was too late to reverse damages because investment into treatment was too scarce. Would you be mad? Frustrated at the little efforts others contributed into finding a cure

I want to change that, not only because I suffer from these arrogant attitudes, also because I see it as morally wrong not to “help your neighbour” in times of trouble.

I can’t emphasise any more the importance of exposing the consequences of this disease for the world to help make these worries a thing of the past.

Having to depend on the national and international demand of others to change people’s priorities is not an ideal situation to be in, because it rarely gets the attention or impact deserved.

You don’t know what you’ve got until it’s gone; but others don’t realise the hardship until they’re dealt with it.
Emile Sande- My Kind Of Love

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