How do I get people to see how bad this is?!

[yaf_user681_15459]

Told by Maddies consultant today that she is very very severe and ""children die with asthma as severe as her""

I kind of knew this but it feels very strange to hear it from a professional that is dealing with my little girl.

The thing is, he said that he wishes what she had was called something else as 'Asthma' seems to be seen as such a lightweight condition these days. There's not enough awareness out there about it's severity etc and how it really truly effects people on the severe end of the disease.

What can I do to get folk to take Maddies condition seriously? When I say she's got Asthma, people say ""ohhh, Asthma!"" as if to say ""is that it?""

Our other daughter has mild Asthma but her symptoms are getting ridiculed by staff at her school. They refuse inhalers etc as they say she doesn't need them or they are ""too busy"" to give them!! Just an example first hand at peoples ignorance!

How can I get people around me to see what my daughter is up against??

[angievere]

Hi Emily, I don't know the answer to this, except to keep plugging away. We've had awful problems with my son's secondary school - getting them to understand he has a serious condition. The PE teacher STILL doesnt get it but after my husband and I went and saw the Headteacher in October last year and basically laid things on the line (and complained!) I think there is a bit more understanding.

Our surgery nurse told me the problem is severe asthma is fairly rare so schools just havent come across it. They think it just means having an inhaler and dont realise that asthma can be life threatening.

I would tackle the school your daughter goes to - go in and see the Headteacher and explain she must have her inhaler when she needs it. Tell them about Maddie. In fact I would tell everyone who says 'Ah only asthma' what the consultant has said.

Sorry I cant be more helpful, I do feel for you. xx

[yaf_user681_15459]

Thank you for your reply.

WE've now taken it further re my other daughters lack of care at school. Hope to get that one sorted v soon now.

As for Maddies asthma, I guess I'm still shocked at how bad it is. My tiny girl, with such a bad condition.

No one sees her hooked up to the nebuliser twice a day, such a tiny little girl, puffing away on a mask, knowing at her young age how much it helps her breath each day. She sits there while the machine churns away. She then has all the other meds too. And then I get ""oh, only asthma"" from people.

Even friends don't realise how bad it is. They don't see the amount of meds she's on, such high doses daily for such a tiny little two year old girl. Just to keep her breathing like them. Her SATs are constantly low but she has adapted to it all. She looks normal, she tries so hard to join in and is, at the moment, doing well. Sometimes she only can walk 50yds before sitting down and panting for breath.

I just sometimes want to scream at people to be a fly on the wall and see what my daughter goes through each day to resemble some kind of normality.

So sorry, this wasn't supposed to be me letting it all out! Funny thing is, she's 'well' at the moment. She needs round the clock care, but we're managing her at home for once which is good.

I guess I'm just scared. Scared of the future, scared of the unknown and scared cos not enough people in the world understand the seriousness of Asthma!

Wish I could put the message out how serious this dreadful condition is.......

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i have also been told that my disease should not be called asthma, due to te severity of it. glad to see that someone else has had this experience.

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hi emily,

i am so sorry that people are so dismissive of how severe our condition can be, especially in such a young child. i have brittle asthma and hate it when you get comments like 'oh just asthma' and 'oh u just need a puff of inhaler u be okay' when actually they dont realise how much meds i need to keep me alive...

and if i dont get the treatment i need in an emergency, i will die. LACK OF EDUCATION AND TRAINING.

just a thought emily, but would it be worth speaking in front of local school at assembly time or speaking in front of the class about maddie's condition ?

so that people are aware of the severity of her condition.

the school defo needs more education, and she needs to be allowed to have her inhaler with her/ given it when she needs it or has symptoms!!!

also, maybe a bit OTT or not, depending on how u feel about it, but have you considered writing in to a magazine to do an article about maddie - you wouldnt have to show her face etc... so that people in local / national are made aware.

dont know if u seen the post on the forum, but aileeen has a article in the take a break magazine next thursday about her daughter keira, who died last year , aged 11, due to severe attack. so that will defo raise awareness of how severe asthma can be. so hopefully people will be less dismissive when people say - 'yes, i have asthma.'

hope people give u the support u need and deserve and hope maddie keeps well.

big hugs

snowygirl

xxx