00:00 Looking in the mirror, Amy sees the impact of eczema, a debilitating condition she has lived with since birth.
00:08 It's just so exhausting and when I get quite upset about it, then I get migraines from that as well.
00:14 When it flares up, she's straight into a bleach or water bath.
00:17 Then I have to get out of that, put on two to three layers of cream, wrap myself with wet towels, wrap that up with bandage or something similar before putting pyjamas on.
00:28 She needs assistance to do so.
00:31 And it's quite difficult to do myself, so it becomes an up to two hour process for my partner and I, usually with a phone call to my mum whilst I'm crying.
00:40 The condition also carries a financial burden.
00:43 I worked out on a very rough calculation that we would be spending over $15,000 a year.
00:49 But its impact goes deeper.
00:51 And the medications you're on, they tell you you can't have children because you have to terminate. That sucks when you try.
00:58 Frequently missing work and events has also left her feeling isolated.
01:02 That's probably the biggest mental aspect of it, of I can't just decide at 8 o'clock in the morning I'm going to go do something at 10 o'clock.
01:09 With hot, dry weather and a high pollen count being triggers, she's preparing stocks of creams, bandages and ice and getting her house ready.
01:17 Things like working out the timer on the air conditioner so that it can be on early, so that the house is cool and at a set temperature all day.
01:26 Experts say she's doing the right things.
01:28 Try to keep it healthy, well moisturised, don't over shower, that's often a problem in summer time.
01:34 Try to use sunscreens that are for sensitive skin.
01:38 But not enough is known about eczema.
01:40 We need research into who gets eczema, why they get eczema, what is the burden of disease for that particular person, their family.
01:48 Advocates want a national strategy.
01:50 Considering it as just a little bit of an annoyance for some people is not what we need.
01:56 We need a national focus, we need coordinated care.
02:01 While Amy would just like more acceptance.
02:03 When they go it's just a rash, it can't be that bad, it's like you don't understand the pain that we go through.
02:09 Hoping for some relief this summer.
02:11 .
