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any one with herditory angio- oedema?

4 replies

eragon · 08/02/2012 21:45

my son has been recently diagnosed with this condition, have been looking for support in other areas, but wonder if anyone has personal experience of this?

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Footle · 09/02/2012 10:54

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eragon · 09/02/2012 14:18

apart from illness and stress has it been fairly easy to control?

this diagnosis is our sons 2nd potentially life threatening condition, so we are finding this hard to handle!

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Footle · 09/02/2012 15:55

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eragon · 09/02/2012 16:52

from what i know this condition its not always herditory it can happen with a mutated gene.

it causes swelling in lungs , soft tissue, and effects joints, and is considered life threatening if not under control. But there are plenty of drugs that can help to do this, so thats the good news we are clinging to!

my son has lots of food allergies, and environmental alleriges, this is a seperate condition to this apparently.

1, in 100,000 people in uk have this.

my son has started on daily steriods to control it, and of course will have to have liver checks and an eye kept on side effects.

looking back on his previous allergic reactions we can pin point this as a cause , rather than a food cause iyswim

facial swelling has been the main latest problem, the steriods we are using dont seem to keep that in much control. so we are waiting for the first appointment with expert doc! Once we can get his meds sorted am sure we will feel much more able to cope with this, but until then are very stressed!

also am stressing over the medical emergency meds more than anything. the idea of him carrying two different sets of meds for different things!!

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