Living With Scaly Skin (Ichthyosis)

Living With Scaly Skin (Ichthyosis)


when I first got this condition I was like it’s cereal MIT was like no it’s a condition I’ll guess what welcome to SBS K join me as I travel around the world an interview individuals living with a condition to prove no matter how you communicate but what obstacles you face you’re always deserving of love and acceptance so without hesitation let’s meet today’s friend when someone meets you for the first time what do you hope they say to you they hope they face me dots you’re a pretty girl and it really cute and all of your glasses yeah so on school people they think that I’m a monster well not I want them to know that it’s really okay and you can’t get it when you touch it yeah see you would catch it of anything and see if you touch it you perfectly fine okay normally people don’t wanna touch you or anything so yeah si yo get away from these people who say like this way I he got these things on her skin and they think it’s cereal I think it’s zero and I think they want Amy how do you feel when they call you a monster well really upset they have to be work full with me and I’ve lots of fun with me you play with the basketball it can a skin for it for your sisters and it grows at a much faster rate than it usually does well then it short and because of that the skin thickens and it gets thicker and thicker and thicker and then all the time it comes off and then it starts the cycle all over again with the blisters there can be extremely painful and they can come at any time it’s very unpredictable once someone’s making fun of her because of his skin say that was a bit worried about that my other faith do not mess with if my sister leave her alone that’s weighted it’s kind of funny what’s your favorite thing to do together leather playing together of course unbroken each other and say goodnight to each other if you could change one thing about yourself what would you change I’d like to change my voice I’d like to have a voice like Michael Jackson does your condition ever make you say no it only makes me start when I’ve got a blister and the cutest was the other half is a small one they’re so cute baby one two baby blisters it really hurts want to pop them with our needle we’re never gonna do that again yeah that’s the blisters gone it pops misuk this nice smooth skin right here we have a little bit of fun about that and we we say come on it’s time to trim your feet and stuff like that and it’s just try and you know help her by making it for in a fun way you know and we get by with a good sense of humor I think everybody likes asking questions and I ask them at school it’s real fun and yeah what kind of questions to be asked well they asked what I have you got that finned what wise why would you bond with that Finn’s too fast we get little kids coming over and the quite inquisitive as children are and they ask oh what’s that on your hands or what’s that on your neck don’t there and then Rebecca and all of her own but she’ll just go off and she’ll go talking to that child and she’ll say it’s okay I’ve got a skin condition but it won’t hurt ya and she explains it herself and I’m always on standby you know should I need to intervene and just explain it but she’s that age and I was she does you know a pretty good job itself and I just learn her own limitations as to what she can explain what a fear yeah but I’m very proud about how she deals with it she’s brilliant what’s it like to be you well I like play Monopoly genuine my wind my brother but sometimes he doesn’t want to play it yeah that’s why I play so much when somebody sees you for the first time what do you hope they think the hope I think that my conscience really grates and they don’t think it’s cereal and I do they don’t think they can eat me because the common well I can tell you that I’ve never once had the thought about grabbing some milk and pouring all over you and having a bite never crossed my mind once I never ever on my hat hey no way thank you for watching if you’d like to meet people who live with the condition from all over the world and learn how to better connect with the people around you take a moment and subscribe appreciate it is there anything else you want to say I’d like to say that oh I’ll say he should or not I like this video and turn on notifications comment down below as well did you just give me a clogging yeah that was also becky we you’re the best marketer i’ve ever seen thanks

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