1st november awareness day

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1st november awareness day

Postby plum » Mon Oct 31, 2016 6:17 pm

i have just read the october e-bulletin and seen the link to the "A day in my Acromegaly Shoes" asking people to take selfies in their shoes.
I wonder if the organisors actually spoke to anyone affected by this condition?
It leaves me feeling very uncomfortable somehow.
does anyone else agree? or am I alone in this?
Plum
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Re: 1st november awareness day

Postby DerryAcro » Mon Oct 31, 2016 7:13 pm

nope your not alone wont be sending mine
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Re: 1st november awareness day

Postby plum » Thu Nov 03, 2016 8:10 pm

Thank you.
That makes me feel better.
But I still feel as though I've been mocked somehow.
The insensitivity seems to have disturbed me quite a lot more than I would have anticipated.
Hey ho.
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Re: 1st november awareness day

Postby member_41389 » Thu Nov 03, 2016 8:19 pm

Plum

I agree with you - it all felt as if the Acromegaly was a bit of a joke to the organisers. I had no objection to the idea of an awareness effort but the whole tenor of the acroshoes bit was trivializing a serious medical problem.
Tim
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Re: 1st november awareness day

Postby plum » Fri Nov 04, 2016 1:38 pm

precisely.
it would be like waving sugary snacks in front of someone with diabetes.
you just don't do things like that.
I did send an email to both novartis and to the pituitary foundation but so far have had no response from either.
hey ho.
have a good weekend all.
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Re: 1st november awareness day

Postby Pat » Fri Nov 04, 2016 3:11 pm

Hi Plum

We’re sorry you felt uncomfortable with the “day in my acromegaly shoes” campaign. We joined in because we thought it was a well organised effort to raise awareness for acromegaly. I can understand that you felt drawing attention to feet might be a little insensitive. As you know, growing feet are one of the symptoms of this often hidden illness, so we thought that a spotlight on the topic was appropriate. The concept was a play on “walk a mile in my shoes” and the theme aimed at being inclusive. People were only asked to show shoes (not feet) so it was tough to see which shoes belonged to patients and which didn’t.

We’d be happy to have a chat if you’d like to call us to discuss further?

P.S. we didn’t see an email come through re this – which address did you send it to? We’ll need to check that we’re not missing mail

Kind regards
Pat
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Re: 1st november awareness day

Postby DerryAcro » Fri Nov 04, 2016 4:13 pm

hi thats ok for some but if i posted a photo of my shoes you would know immediatly. I got mine specially made at great cost over a year ago i think i have worn them 3 times in town and noticed people where pointing and laughing someone called them spastic shoes. have not wore them since and suffer when i wear shop bought shoes ie blisters.
I will send you a picture privately if you wish and you may decide for yourself
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Re: 1st november awareness day

Postby plum » Fri Nov 04, 2016 10:55 pm

Hi Pat

it was very far from being 'a little insensitive' as you suggest.
it is good to raise awareness but please don't mock us.
we are not clowns to be made fun of.

this thing is hard enough to cope with on a daily basis, without people reinforcing and highlighting the problems of distortion.
do you also plan a photo campaign showing our oversized hands (in gloves)? or facial changes? that would be a laugh. not.

it may seem trivial but to some of us it isn't.
the feet are just one of the whole gamut of changes that we have undergone.
regardless of who wore the shoes, the campaign has highlighted the feet.
and therein lies the problem.
whoever ran this campaign simply has no idea what this is like.
have they ever tried to hide themselves because of the shame and embarrassment at what they have become? i doubt it.

i just replied to the october e-bulletin email and it didn't bounce back so it went somewhere.

regards

plum
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Re: 1st november awareness day

Postby plum » Fri Nov 18, 2016 11:19 pm

hi

just wanted to give an update.
In response to my emails i've been contacted personally by both the Pituitary Foundation here in the UK and by a PR person from Novartis in USA.
Both said that they didn't mean to cause offence and that raising awareness had been the main aim.

I'm touched at the speed of their responses and at the effort they have taken to reply.
Novartis might get in contact next year to ask for ideas / comments if they decide to run another awareness raising thing.

Just writing on here since the apologies go to everyone affected by the campaign.

best wishes

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Re: 1st november awareness day

Postby DerryAcro » Sat Nov 19, 2016 3:53 pm

thanks for that plum,
now they are more aware before they run another awareness campaign lol
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