Wednesday 20 February 2013

Rare disease day anyone? hmm... i thought as much!

So... are you going to do anything?

rare disease day clip share and spread the word!

It is easy with anything we percieve as 'sad'  (poverty, hardship, loss, lack of family, disabilities) to look the other way, or to quickly glance and thank God it is not us in their shoes. But you know what? some of the most amazing people i know have endured more loss than i think i could cope with.

Our God IS bigger than all we face here on earth, but that is no excuse to simply wish people a quick prayer or a pat on the back, and feel we have done our 'bit'.

We are all capable of making a real difference, and it is time we started caring beyond what affects us personally.

I know when My first born was diagnosed with haemophilia, for a long time i felt so isolated from anyone who understood or really cared. I think looking back our parents were in a shock of their own, and backed off. Our haemophlia centre is a 2 and a half hour drive away, as is the haemophilia foundation of NZ's outreach. So it was months before we met anyone who had any information, and even then there was not a specific place we could go to locally to talk it through.

However, I had the most wonderful Plunket nurse who would visit us, and although she did not have answers, certainly she would sit with me and just listen. She would tell me i was doing a great job, and she would tell me how handsome my rather bruised looking baby was.

When my son was diagnosed it was as though all material things were turned to dust. The world did a flip and we were parents of a 'special' little boy. Back then it really was taking things day by day.

Parents of kids with special needs have different journeys to go on. For us there were a lot of hospital stays, a lot of rushed trips to accident and emergancy, a lot of needles in our little boy, and a lot of nasty looking bruises.

Having to explain the bruises to people in the supermarket, when still getting to grips with the disease itself, was not fun. Pointing out bruises on a haemophiliac is like pointing out the wheelchair on a quadriplegic.
Although, certainly explaining them is better than ignoring disapproving looks from disapproving people.

My two hemo boys are the only haemophiliac children in our city, so awareness is minimal. From the outside, physically -  they look like any other young boys (although they are possibly more handsome - but that is my own bias)
Anyhoo - my point is that besides my husband and i speaking to people on a one on one basis and watching their eyes glaze over as we speak- there is not really a way to raise awareness.
My husband has worked at the same company for nearly 4 years, and the men he works with still don't know what haemophilia means. I would be quite sure that most of our family don't really know either.

It really is only a certain few people who have been close enough to see, and kind enough to support us, that know what it means.
I would like people to know more... goodness -  i would like the Doctors in our  A and E to know more about haemophilia !!!

Haemophilia is manageable, the treatment is given via the veins - it does not last long in the system, so our boys are accessed a lot. Blessed are we - that we can do this from home  (or in the school car park on a rushed morning) and so with treatment our boys can have a 'normal' lifestyle.
 I think because the boys don't really look different, and with the treatment they appear as any other child their age, people assume it's not really an issue. But without treatment our boys would be crippled. In fact, even with treatment, from damage to joints, there are many children living now, who are really suffering from the complications of haemophilia. It is a rare disease, and it can have devastating effects.

There are many, many other rare diseases, and families on the 28th of this month - next Thursday are raising awareness of their own particular rare disease. People are doing this around the world, so please support them. Listen to them, for they so want to be heard.

What are your thoughts? what will you do / would you do -  to raise awareness?





2 comments:

  1. Wow I didn't realise they were the only ones in the city! When we were in the hospital the other day I mentioned it and although one nurse knew about it, the other had to ask if factor was given intravenously or through the muscle. I guess they can only learn so much at nursing school - and not about every rare-disease. (I set them right anyway so there's another with a little more knowledge!)

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  2. haha thanks Sim! Yes we get really 'dumb' questions from doctors in a and e also asking if we treat them IM... i feel like saying - "are you really qualified to be here?" they look at us like we have two heads when we tell them we do the treatment IV... as though that has never been heard of... but you are right, learning about every rare disease would be difficult.

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