Aadam

(Audio or text only clips) Aadam was diagnosed with eczema as a baby. Aadam struggled with having and treating his eczema throughout much of his childhood. This inspired him to write a book called Itchy Witchy’ to help other children and young people affected by eczema.

Aadam was diagnosed with eczema as a baby when he began itching, scratching and crying a lot from the pain. His parents have invested a lot of time and money into finding solutions, including through private health insurance. He was eventually referred to a large, specialist children’s hospital at which point everything changed. The dermatology department at this hospital have helped enormously throughout the years and his eczema has greatly improved since he was 14. Aadam also has a rare eye condition related to eczema which the specialist hospital knew all about. Aadam feels that the staff at the hospital have really wanted to understand him and his condition to help in the best possible way. This is in contrast to his experience of previous GPs who have not always been very supportive but have been useful in giving dermatology referrals.

Aadam’s eczema mainly affects his hands, face, legs and arms. Aadam is also allergic to nuts, grass, trees and dust mites. He has had severe allergic reactions before which have required hospitalisation, steroids and oxygen. Aadam had immunotherapy for over 4 years to help him tolerate allergens such as grass and trees. Aadam find stress to be a major factor for flaring up his eczema and he uses strategies like distracting himself by playing video games.

Having eczema was very difficult for Aadam in childhood and it had a big impact on his life. He remembers how much he used to hate his eczema treatments. He disliked the creams and ointments because they were greasy and he feels that they make him look sticky and sweaty. It was only as he got older that he understood how helpful the creams and ointments could be. Aadam was also picked on at school by peers who said that he had old man’s hands because the eczema would cause them to become wrinkly. Aadam has always felt quite different and says that his eczema has made him a more self-conscious person, both in terms of his appearance and the impression people might have of him. Aadam is very aware of the way his skin looks and prefers to conceal his eczema flare ups by, for example, wearing long sleeved tops. He also grows out his facial hair to conceal some of the eczema and because he finds that shaving is very irritating, although it can also become itchy if the beard hairs get too long.

Aadam has had some bad reactions to some treatments before, such as Protopic which brought him out in a bruise-like rash. He has been surprised by how effective some shop-bought creams have been, such as Vaseline. Hydrocortisone cream has made a huge difference to the eczema on his hands and he has used lots of strong steroid creams, although he has concerns about the side effects and long term impacts of using steroid creams, especially on sensitive areas like his face. Aadam has recently been transferred from a children’s dermatology clinic to adult services and he has found this change difficult. The adult hospital has not been as knowledgeable as the children’s specialist hospital, especially with regard to his eye condition.

Aadam’s parents used to help him with eczema treatments when he was little, such as by applying bandages to him to help the skin heal. He says that his parents have been very supportive: his dad has given lots of practical help and his mum often looks for new solutions as well as contacting support organisations. Aadam has also done a lot of research himself and knows how to manage his eczema very well now.

His experience of growing up with eczema inspired Aadam to write a story book for other children affected. Fixers UK helped him develop and produce Itchy Witchy’, supporting him in finding an illustrator and distributing the book. Since writing Itchy Witchy’, Aadam has given talks at schools, made several media appearances and had a lot of positive feedback, including from parents whose children have eczema. He was also awarded a Diana Courageous Citizen Award and has met the Prime Minister. It means a lot to Aadam to be acknowledged and to be able to help children and young people with eczema and he thinks that there should be more mental and emotional support available.

Aadam talks about his parents first seeing his eczema symptoms.

Age at interview 18

Gender Male

Age at diagnosis 1

I don’t really remember much, but from what my mum tells me, it was around the time she took me to visit family in Atlanta. And when I was going there, I was completely fine. While I was there, I sort of began itching and scratching and on the way back you could tell by just well, she didn’t know it was eczema then. She just assumed it was dry skin. But it was sort of developing eczema. So, yeah, and as time progressed my parents were very concerned, because I wouldn’t stop scratching. I would always cry about it. I was in a lot of pain. So they would try all sorts of cream. I mean, the amount of time and money my parents invested in trying to find a solution is quite sad, actually, because they did have to go through a lot.

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Aadam’s dad would pick him up from school when his eczema was sore.

Age at interview 18

Gender Male

Age at diagnosis 1

When I was in primary school, I think at least once a week I would have to go home, because of my eczema. Sitting in class, especially when you are bored you begin to scratch and I think that’s something I sort of notice now. Like you subconsciously begin to scratch and then I still do it to my face now [laughs] I have to be careful about that. But when I am not careful then I realise what I’ve done and that it’s really stinging and itchy. So my dad would always get a hard time having to pick me up. So he would have to come like out of work, usually. Because his job back then was quite flexible and it was quite fortunate to have him around, but if not him then one of my aunties would pick me up or something. And I did miss a lot of school.

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Aadam was frustrated about having a hospital appointment with long delays the day before a mock exam.

Age at interview 18

Gender Male

Age at diagnosis 1

Something happened recently and I was not happy about it. I think this was last year. Yeah, it must have been last year. I had to go through the doctors, no no, [hospital name] eye hospital for an appointment. And, the date of it was the day before one of my exams. I was furious about it [laughs]. I said, I can’t go. They need to change it. I’ve got I’ve got an exam the next day. And my mum did try to talk to them and they just did not understand. I mean, these were my A Levels so of course, I am going to not be happy about it. I ended up having to go to the hospital and it was the day before my chemistry exam, I remember now. And, I was in there waiting for five hours. So, my appointment was at like two o’clock, no, like one o’clock and I got seen at like five thirty-ish. I can’t remember something like that. I had a huge wait and I was incredibly annoyed. So in terms of like having to go to an appointment that it doesn’t even take place on time, makes me feel a whole lot worse. The fact that they said, if I did not go to this appointment, I would be taken off the list orbe sort of unsubscribed, I guess. So I had to go to it.

That must have been so stressful.

It was a horrible time. I was not happy that day. I was in a bad mood the whole day.

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With the help of Fixers (charity), Aadam wrote a children’s book based on his experiences to help others with eczema.

Age at interview 18

Gender Male

Age at diagnosis 1

I remember one mother was even saying to me that she gets the book out whenever her child scratches. It makes me feel good. I mean, one of the aims for this book, a more personal aim was something, like eczema is something that has severely affected my childhood. And rather than looking at it so negatively I wanted something positive to come out of it. And although like it’s still like quite a hard time to talk about it’s not so difficult now that I’ve done something good about it.

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Aadam had immunotherapy treatment to help ease his grass allergies, which triggered his eczema and asthma.

Age at interview 18

Gender Male

Age at diagnosis 1

I am also allergic to grass and dust mites. But for the trees and grass I had something called immunotherapy, which is quite a new sort of treatment that I was fortunately able to get off the NHS, because it does cost a lot. And it’s sort of helped me deal with tree and grass allergies a lot easier, so I don’t I don’t feel breathless easier, because I used to notice when I used to do cross country running that by the end of it I would find it really hard to breathe. So even playing sports in the field, I would find it really hard to breathe. But since the immunotherapy, which took which took four years, which is very long for it took a lot of dedication. Since the immunotherapy I have been a lot better. And hay fever hasn’t been a severe issue of mine anymore, which is good, because I do really enjoy the outdoors.

Well there were two options. There was the injection option, which would mean coming into hospital and having an injection every two weeks. But me being afraid of needles, [laughs] I obviously didn’t go for that option. The alternative was, these sort of mouth drops which I am guessing have like a condensed part of a tree or grass inside [laughs] or the parts that actually were I guess the allergens. So, that involved spraying or putting droplets of the substance in your mouth, once a day. The first time I tried it, I had an allergic reaction. So then, they had to give me a starter pack, which is more or less concentrated, so I was able to sort of get myself used to it a lot quicker. But yeah it was, it was very, it was hard, especially when you would forget. And then, sometimes, the underneath of my tongue where you are supposed to place the droplets and leave them for about two minutes, that part would swell up and go really numb. So, yeah, it was a very long process. It did mean I had to miss like certain amounts at school.

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Aadam finds Vaseline works well for his skin. Now that he can no longer get it on prescription, he and his parents look out for special offers in shops.

Age at interview 18

Gender Male

Age at diagnosis 1

Recently Vaseline has been taken off prescription. I don’t know why. I am really annoyed about that. Because the last time I asked for Vaseline petroleum jelly, I was given some cheaper option which is not as good. It actually irritated my skin. So, I ended up having to buy the Vaseline products myself, of course. Although some, although like a bottle is pretty expensive I do tend to take quite some time to go through them. But then my dad keeps an eye out for the offers, like the other day, my dad was saying, well, they have got these bottles of Vaseline Intensive Care and they are doing them £2 each. So then he bought like four of them, which was like the last four there, knowing that I would I would go through them. They will probably last me about a good six months.

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Aadam talks about how he decides whether to use steroid cream on his eczema or not.

Age at interview 18

Gender Male

Age at diagnosis 1

I usually intensively cream myself for like two days. And it can either get better or stay the same or get worse. If it stays the same or gets worse then I decide it’s appropriate to use steroid cream. And, yeah, I am usually quite a wimp with the steroid cream well I used to be because it used to sting really bad.

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Aadam used Protopic on his face but found it caused a rash.

Age at interview 18

Gender Male

Age at diagnosis 1

I remember this cream which usually works on my skin called, Protopic. It’s good because you are actually allowed to use it on the face, whereas steroid creams, it’s a very concerning issue, because the face and the skin on the face is very sensitive. But when I used Protopic on my face, I ended up having a huge like bruised rash across my face and I was really scared to go to school after that, because suddenly I just come to school with a huge brown rash around my mouth and cheek and I was very embarrassed.

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Aadam’s mum reminds him to take an antihistamine tablet, especially when there’s a lot of pollen outside in the summer months.

Age at interview 18

Gender Male

Age at diagnosis 1

So dust, trees, grass really did irritate my eczema. My mum understood that. So, especially in the summer she would be like, oh, although like I am not eating like anything I am allergic to or something, she would still say, oh, there is potentially a lot of pollen outside today. You should have a Cetirizine tablet to help calm your allergies down so you don’t itch a lot.

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Aadam explains about an eczema-related condition called keratoconjunctivitis that affects his eyes.

Age at interview 18

Gender Male

Age at diagnosis 1

It is sort of based upon the fact that my eyes aren’t able to lubricate themselves efficiently enough. And this can cause like irritation which can ultimately lead to ulcers. Ulcers are very dangerous, especially on your eyes or ulcers aren’t dangerous, but on the eyes they are.

They can potentially blind you, in a sense. So, my parents were very concerned. And it got so severe at one point that they decided because I was in a lot of pain and I wasn’t able to go to school that they should conduct this sort of surgery where they inject steroids in my eyes, which is very worrying, well, they don’t actually put it in my eyes, but it’s in my eyelids where most of the irritation occurs. And, I remember the first day I had that operation. I was crying before the operation, because see – I was very scared. But it was very, it was unsuccessful because the next day I woke up and I was still in pain. So they did the same thing again, so two days in a row I had the surgery done. And after that, I was better. I was, I was really well. And then again, six months later, it sort of came back. But I think it was that time when it came back after six months it had gotten so bad I remember the consultant saying, it also has formed some sort of shield and I don’t know what that is in biological terms [laughs]. But I needed immediate surgery and then after coming out of surgery, it became evident that I’d actually got a scar on my eye.

Okay.

But fortunately, it hasn’t affected my vision.

Do you still have to go back for treatment for?

Yes. But it seems as though like the amount of operations I have become sort of, I don’t know, exponential. Every time I have had one, the gap between is a lot larger. I think the last time I had one was about four years ago. which was, it’s great in a sense, because that means as the gap gets bigger, I am a lot less likely to have flare ups. I mean when I do have flare ups, I still have to use eye drops daily, although I don’t really use them that much in the winter, because that’s when it’s less severe. When it does flare up, I can usually control it with steroid eye drops, which I rarely use.

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Aadam remembers being one of the first boys in his year at school to get facial hair. He balances keeping his stubble the right length so it doesn’t irritate his eczema.

Age at interview 18

Gender Male

Age at diagnosis 1

I think facial hair is one of those things that it depends how you sort of portray it or if you keep it neat, I guess. I think that’s something I did do. So, I was reluctant to shave mine all my, all my facial hair off, purely because when I had done it, it gets, especially back then, it does it does get very itchy. I mean, I shaved my neck and I shave sort of around here where I tried to shape it up. But, the itchiest places are just like above my chin and those areas. So, I don’t really shave those because I know that if I do it each day, it’ll it will be really hard to stop and it also gets bumpy and red and I don’t really want to show people that. But yeah it was a learning curve as well [laughs].

My high school. So they would, they actually ran a facial hair check around our year. And, eventually I said, okay, not that I was growing it for religious reasons, I said, I am just growing it for religious reasons. And, because I’d never actually grown it out before. Little did I know that that would also cause my face to become very hot and that would irritate my eczema too. I still had to keep it like a sweet spot between short and long which is like the most less irritating length. But my school wouldn’t understand that. So, I said, okay, I am growing it for religious reasons. They went, okay then. But then like the moustache is just irritating on your lip. And religiously as well, in my religion, which is Islam it’s not really supposed to go like below your lip, because then it gets into your mouth and then food gets stuck to it and sort of logical reasons like that. So then I trimmed my moustache and she said, oh, what about this part and I said, that’s my moustache. That’s not my beard [laughs]. And then they sort of threatened to call home and stuff. And eventually I just sort of found the sweet spot, which was stubble and I said, yeah, I shaved yesterday [laughs]. It’s grown back to stubble. Yeah, and then they never really said much about it.

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