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Long term health conditions (young people)

On being diagnosed with a long-term health condition

We interviewed young people with long-term health conditions who had been diagnosed at birth or when they were a few months old, as well as others who were told about their illness when they were children or in their teens and one young woman who was diagnosed in her early twenties. We talked to young people who had been diagnosed with the following long-term (chronic) conditions: asthma, chronic eczema, chronic pain, congenital heart problems, cystic fibrosis, epilepsy, juvenile arthritis, kidney disease, chronic fatigue syndrome (CFS/ ME), morphea, muscular dystrophy, sickle cell disease, scoliosis and type 1 diabetes. 

Those diagnosed at birth or as younger children tended to learn about their condition gradually as they grew older. Some young people said that initially their symptoms were minor and didn't really affect them very much. They remember going to see doctors in hospitals but were able to go to school and join in the activities with other children. One young woman with juvenile arthritis said that when she was a child she was unaware of how serious her condition was or how it was going to affect her life. Another woman, with cystic fibrosis, said that her diagnosis only began to 'sink in' at the age of 10 when she developed an infection and her symptoms got worse. Others remember that as children they spent a lot of time in hospital and missed out on schooling and friends.

 

She was 9½ when she was diagnosed with arthritis but it wasn't until a couple of years later that...

She was 9½ when she was diagnosed with arthritis but it wasn't until a couple of years later that...

Age at interview: 21
Sex: Female
Age at diagnosis: 12
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Right, OK. I'll start at the beginning. I was about 9 ' and I had a swollen left thumb and so I went to my local GP who wasn't there and I saw a locum instead and he said that it looked like arthritis which was a bit of a shock to my parents. I was young so I just thought, 'Oh I don't really know what that means', so I didn't really mind too much. And, and he referred me to the consultant I still see now at my local hospital. And the first thing she asked me to do was put my, both my arms straight and when I did that I noticed that my left arm didn't go straight, but my right arm did. 

And so I had it, I had it, the arthritis in my thumb and my left elbow and it was strange to me 'cos I'd never really looked at my arms like that, I'd never said, 'Oh, can I put my arms straight?' or anything. So I just, and again I still thought it was just one of those things, it didn't really mean much to me as a child. I, I'd heard of it and I, I, I think I knew what it meant but it didn't really impact me too much. It sort of, I just thought, 'Well that's OK, I can live with that. That, that'll be fine'. And then it sort, it took a few years to get as bad as it is now. I say bad, it's not as bad as it can be but is in most of my joints. I think I only really have a couple of joints that aren't affected and over the course of the years it spread to me knees so I think I must have been probably 10 or 11 then. And that's when it started to sink in a little bit that it was something a bit more serious and something that would be more difficult to live with. But I was young so again it didn't really bother me too much, I was still quite carefree.
 
 

He was 11 and changing schools at the time of his diagnosis with type 1 diabetes. Initially he...

He was 11 and changing schools at the time of his diagnosis with type 1 diabetes. Initially he...

Age at interview: 16
Sex: Male
Age at diagnosis: 11
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Okay. Well I was eleven years old when I was diagnosed. I was just in the summer holidays between primary school and secondary school, so it was quite a shock. And, all my primary school friends didn't really know about it, because I'd finished there and secondary school friends though would know me with it. It was quite hard starting a new school straight after being diagnosed, it was quite a big thing, especially for my Mum and.

Why did you find it hard?

Well actually constantly kind of watching, what my blood sugar was, very high or low; I needed to know about that.

You were diagnosed with diabetes type 1.

Yeah, diabetes type 1.

I didn't really know much about it at the time, and as I found out more about it, kind of got used to it and became more comfortable with it, I didn't really see it as that big a thing, at the time. I think there was a point when the first time I was there, I got a bit down about it but, I think my family helped me through that.

What do you mean, 'a bit down?'

I don't know.

Were you feeling 'Why me?' or'

Yeah. Yes, why me and, I'd probably been ill for quite a long time building up to it, so, I don't think my Mum was that surprised when I was diagnosed because I had been, I was very, very thin, lost a lot of weight because of it.

And this was before you, what were your symptoms before you were diagnosed?

I was drinking gallons, and urinating a lot, very lethargic, no energy, very very thin, very white, very pale.

For how long did the symptoms last before you were diagnosed?

I'm not really sure, I could have been diabetic already for up to six months or a year I think, but we went on a camp in the summer holidays, and my Mum said afterwards, from across the field she could tell that something wasn't right, I'd obviously lost weight, I was really white, and so I think it kind of peaked at that weekend away, and I felt very ill on the way back from there. So she took me to the doctors and I got a blood test, and it came up.

 

She was diagnosed at 13 with kidney disease. For 3 years she was fine on her medication but then...

She was diagnosed at 13 with kidney disease. For 3 years she was fine on her medication but then...

Age at interview: 18
Sex: Female
Age at diagnosis: 13
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Okay so if you start.

Okay, I first became poorly when I was thirteen years old. I felt fine in myself, it was just one night I was staying at a friends and my ankles were very swollen and we weren't sure why, but it was midsummer so I thought it might just have been because of the heat. The next morning it had gone down, and then a few weeks later, I was playing in our back garden in our paddling pool, and a neighbour noticed that my legs were really swollen, so that week my Mum took me down to our local doctors, but they didn't think anything too much was wrong. They just thought I might have a hole in the heart, and they took some blood tests. The next day we had a phone call saying that we had to go straight to our local hospital, as soon as possible, because they had picked something up in my kidneys. So we went there. I spent about four weeks on the ward and had all sorts of different tests done, they couldn't really find what was wrong, so I was then transferred to [hospital] where I was then again tested for lots of different things. I was given a renal biopsy, which showed that I had mesangiocapillary glomerulonephritis type II, and the type II means that even when I have a transplant it can come back again. I was put on a low dose of, to start off with I was put on a high dose of prednisolone, a steroid, and was very stable, and they just slowly weaned me off of it as I was on that for three years, and then, I got to a low dose of, it was about 5mg alternative days and my body just didn't like that, and everything went down hill. But in those three years I was at school fine, just enjoying myself like any other teenager would, apart from taking a few tablets here and there.

When you say you went downhill, what do you mean?

All of a sudden my blood levels were going very high, my creatinine jumped high, and they found a lot more blood and protein in my urine which showed that my kidney was letting a lot out which it shouldn't have been. I then had another renal biopsy, and that showed that in my kidney I had lots of, to start off with there was lots of little holes, but they had now gradually got bigger, so I was losing a lot more of the stuff that my body needed, I was also holding a lot of extra fluid all over my body, I was very puffy at that time. They let me go away to monitor me, I went on holiday for a week but couldn't enjoy it because I was, by now I looked about nine months pregnant, and to get up and walk around was very difficult and painful for me at that time. So I was, half way through the holiday I had to go back to the hospital, I was put on a drip to try and make me get rid of all the extra fluid, but to start off with that worked really well, but then it just stopped working. My body didn't want to cooperate, so about a week after that I was told that even though that wasn't working, I was alright, and because my main worry was being on dialysis, I was told that I wouldn't be on dialysis for ages. About a week later everything had gone downhill even more, and I was then told that I was going to have to go on dialysis, that week. Which was a big shock, it really upset me.

Why?

Because when I was younger, when I ever heard of you know dialysis, renal failure, the first thing I thought of was, 'Well I am going to die.' You know because at that age you don't think about transplant and all those different things. So when they explained it to me I was, it settled down a bit, but I was extremely scared about just the whole thought of sitting there having a machine do everything.

Sometimes a young person's condition was discovered after a sudden illness. Several young people said that they developed symptoms fast and within days or weeks they were admitted to hospital. A girl who was diagnosed with epilepsy after a sudden seizure said that there had been no earlier signs of the illness 'One day I was OK and the next day I was someone with epilepsy'. One young man diagnosed with juvenile arthritis said that his physical problems appeared very quickly and within a few weeks he found himself using a wheelchair and a Zimmer frame. Until then he thought that only old people got arthritis. 

 

Was diagnosed with asthma at age 6 months and was given his first inhaler at the age of two. He...

Was diagnosed with asthma at age 6 months and was given his first inhaler at the age of two. He...

Age at interview: 16
Sex: Male
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Oh yeah anytime. I was diagnosed when I was six months old and they said I had asthma. But at the time they didn't really know what to do because I was so young. So they just sent me off, just sent me off when I was six months old just to keep an eye on it. And then I was about two then and I came back and they, they thought I should have my first asthma pump because it was getting so bad that I, I needed something to help me. And yeah so, that was when I got my first asthma pump. And from then on it, it was just worse and worse. I started having a lot of asthma attacks and yeah but I carried on using my medication but still I was just getting worse and worse. And I just was really hot and I couldn't breathe or anything like that. And they were, just got really worried about me and I was in hospital for a while and yeah just loads of asthma attacks. 

And then it was about, must have been about nine or ten. It gradually, didn't have so many asthma attacks and started feeling a bit better. Started being able to do more things like sports and stuff like that. And just built my way up now until it's still bad but I can control it better. Just built up so I can control it basically.

 

Within days after getting food poisoning all his joints had swollen up. Doctors diagnosed him...

Within days after getting food poisoning all his joints had swollen up. Doctors diagnosed him...

Age at interview: 17
Sex: Male
Age at diagnosis: 7
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I was at my grandma and granddad's and my dad came to pick me up and my wrist was really stiff and swollen. So we called in at the hospital in [town] on the way back. And they thought that I had a fractured wrist. So they put it in plaster and said come back the next day to change the plaster and check it. And the next thing I knew they were not sure whether it was actually a fracture. They thought I had fluid on the bone. So they admitted me onto the ward and within about 24 hours I was on a drip. I didn't really know what was going on and they didn't seem to know what was wrong with me. And within a week all my joints had swollen up' my knees, my ankles, my wrists. I was unable to move. I was in a lot of pain.

And I was in hospital I'd say for a good two weeks and. Can't remember what medication I was on but I remember there was a lot of new doctors and researchers. And they were all around me and trying to work out what was wrong with me. Eventually they realised that it was arthritis that I'd got. And I was in hospital for about two weeks. And then I was stable enough to go home. And I was in a wheelchair because I was unable to use crutches 'cause my wrists were still bad. So I was in a wheelchair and I had a Zimmer frame for around the house. 

How old were you?

I was ten at the time so it was. I can't remember how I felt at the time with only being ten but I can remember feeling. It was very strange you just, you know, being told you had arthritis at ten [laugh]. You know you just thought of old people with it but when I was brought home and I was like in a Zimmer frame that was even more strange because you know, you don't think you're going to be using a Zimmer frame when you're ten years old.

And I was going back for regular outpatient appointments in [town]. I was having regular physiotherapy. And then I was put on steroids and they really whacked it into remission. And I was on sulphasodazine I think at the time as well for pain relief.

Symptoms of both asthma and of scoliosis sometimes came to light during school sports lessons. The father of one young woman recognised her diabetes symptoms (thirst and tiredness) because there were others in the family with diabetes. Some young people said that they had symptoms for a long time before they were correctly diagnosed. One woman with cystic fibrosis thought that there was a lack of awareness of her condition twenty-three years ago. Another young woman who was diagnosed with cystic fibrosis at the age of four had first been misdiagnosed with a number of other conditions including asthma and milk allergy. 

Doctors sometimes seemed to think that a mother was exaggerating her child's symptoms. One young woman said that it was the nurse at an A&E department who realised how worried her mother was and decided to do a test that revealed that she had cystic fibrosis. In another case the mother was told by a doctor (in another country) to go and have another baby and to stop worrying about her son. The parents decided to bring him to the UK where he was diagnosed with muscular dystrophy. 

 

Doctors didn't seem to believe her mother when she said her daughter was very ill. She was...

Doctors didn't seem to believe her mother when she said her daughter was very ill. She was...

Age at interview: 21
Sex: Female
Age at diagnosis: 4
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It isn't really a big story at all, its I think I was diagnosed when I was four, which was quite late. I was diagnosed with a few different conditions. I was diagnosed with a milk allergy, I was diagnosed with asthma, and there was one doctor and it took four years for my Mum to get, to get the doctors to pay attention to the fact that I was really quite ill. And one doctor basically took one look at us, and decided to take us in for the relevant tests, and he immediately found out what it was that I had, and that was when I was four, so, I had a couple of years where I was in and out of hospital sorting myself out, and then it was pretty much quite, I think I was about 5 or 6 and I think I had my last serious chest infection and then I was I pretty much really really well until, you know, I've had the odd chest infection, maybe like when I've had a bad cold, but apart from that I've been perfectly healthy ever since. So, I mean I've been kept a close eye on since I was that age, having regular appointments every six weeks to keep on top of my condition and having regular diagnostic tests and things, but apart from that I've never had to be hospitalised since, so it's pretty much in control and stable.

Okay, do you have  to have I.V?

No, I've never had I.V.

No.

No. I'm on Creon which is like an enzyme that everyone with Cystic Fibrosis has to take, and I take vitamins, fat soluble vitamins, but apart from that I haven't had to have anything else.

Yeah, it affected my Mum quite badly because she, my Dad worked away when I was younger and he was home, I think it was every other weekend, or every weekend, and then the times when he wasn't there my Mum was the one who was up with us, and I would have constant chest infections, this was before I was diagnosed, so I'd have constant chest infections, I wouldn't be able to run around when I was younger because I would just be absolutely shattered after five minutes and absolutely drenched in sweat and it would be really quite severe, and she used to get the doctors out, like my local GP, she used to call out every, more or less every day. She was getting no sleep. I was having no sleep, and, when he came I would be fine for like the ten minutes that he was there, you know the symptoms would be eased compared to what they were, and, for a lot of the time they were blaming my Mum for being neurotic and saying that there was nothing wrong with us, I was a healthy child and it was frustrating for my Mum and you know she used, she didn't used to get a lot of sleep because obviously my brother was young as well at the time, so she had to look after him and look after me, and she had to rely on family and neighbours to come and take care when she had the chance to sleep, but she was very anxious and worried and she went through a really really bad time until my diagnosis when everybody sort of stood up and sort of says, 'Ah, well there is actually a problem.' And it was like late eighties so, there wasn't as much known about CF back then, than what it was, people really didn't tend to reach past their teens, it was rare, so my Mum was faced with this massive, sort of diagnosis, and, she was told that you know, the future was looking bleak for us, and I wouldn't get any better, and it was obviously really more difficult for her than anybody else, but, you know, once people started opening their eyes and seeing that there was something wrong, she was able to get the support that she needed and things like that so that it was probably most hard for her.
 
 

His mother suspected that something was wrong because he used to fall down a lot. The doctor (in...

His mother suspected that something was wrong because he used to fall down a lot. The doctor (in...

Age at interview: 18
Sex: Male
Age at diagnosis: 3
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Hello my name is Hassan [surname]. I've Duchenne Muscular dystrophy and this is my story.

I was born on February the 15th and everybody was very happy in my family because I was the second boy to be born. And at that time nobody knew what, what, what disease that I had because everybody thought I was ok. And my mum was at the hospital so my grandmother took me home. She used to make me drink milk from the bottle and so on. And everybody thought I was ok. But when, slowly I gradually grew up. My grandmother and my mother saw something in me that wasn't quite right. When I ever used to walk and run I used always to fall, always used to fall. 

And my mother told this to every doctor in Pakistan, every doctor. They said, 'Nothing wrong. Something is wrong with you.' They told my mum there's something wrong with her. And he said, 'You should have another baby'. Because you know how doctor's say, say that something's wrong with you and not with your child. So my mum had [name] and when he was born after that we found out. 

We came to England and we went to the hospital, [name] Hospital in London and  they took my biopsy. It was on my left leg. And then we got the bad news that I had Duchenne Muscular dystrophy and this dystrophy came up in, in our family. We were the first kids to have muscular dystrophy, both of us. And my mother was in shock and my father was, said that 'He could not believe it'. And the whole family knew.

And I then grew up as every boy does and I had a very good childhood. Everybody used to love me. Said I was the greatest boy in the world and I got all the presents and. But I was a very different boy. I used to take care of everybody. I used to be like I was very kind. I used to talk to kids and everybody, to my mom. I'd write stories.

It can be particularly difficult for teenagers to be diagnosed with a long-term condition that requires long-term treatment and medical supervision. Some said that they found it very hard to accept their diagnosis and reactions often included shock, depression and denial. A girl who was later diagnosed with ME/CFS (also called chronic fatigue syndrome) didn't want to admit she was feeling unwell. A young woman was shocked to be diagnosed with epilepsy even though her father has the same condition. Another young woman with epilepsy was angry and remembers thinking 'why do I have to have this fucking illness that is going to ruin my life'. Looking back, she thought that to have been able to talk to other young people with the same condition would have helped her a lot. A young man diagnosed with HIV at the age of seventeen said that he felt that doctors had 'lied and cheated'. The HIV test was presented as a routine kind of test and he had no prior counselling and the doctors didn't explain clearly about how his illness would affect his life. 

 

Her father has epilepsy so she grew up with somebody with the same condition but her own...

Her father has epilepsy so she grew up with somebody with the same condition but her own...

Age at interview: 29
Sex: Female
Age at diagnosis: 15
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My dad has had epilepsy since he was 9. So it's something that I've always been aware of and I've grown up knowing about. But when I was 15 I had my first seizure, which was what's called a generalised seizure, where I fell down and shook, you know, losing consciousness for, for a couple of minutes and then coming round and being very confused.

It was a real shock when I was diagnosed, or certainly when I had my first few seizures. Because with a lot of conditions you can tell there's something wrong. You know, you might have pain or you might have fatigue. But certainly with my condition, it just happened. One day I was okay, and the next day I was somebody with epilepsy. And that was a real shock. You know, even though I'd grown up with somebody in my family having it, it's very different when it happens to you.

So I was diagnosed through going to a paediatrician and having various tests. Looking back, the tests, you know, all went in a bit of rush, because I was diagnosed pretty quickly. And to be honest I don't remember too much about the tests. I wasn't actually given that much information about the condition at the time. Partly that didn't bother me, because I'd grown up knowing about epilepsy. But I know now that there was a lot of information that, that I should have received, but I didn't. You know, nobody actually told me what epilepsy was. Which, you know, when you think about what a complex condition it is, you know, no doctor actually said, 'This is why your brain's acting like this'. Which, looking back, you know, it was really surprising. So really it was a case of being diagnosed and given medication and saying, 'Okay, you know, come back in a few months and we'll see what happens'.

 

The doctor didn't make him aware that 3% of people with HIV develop AIDS much earlier...

The doctor didn't make him aware that 3% of people with HIV develop AIDS much earlier...

Age at interview: 26
Sex: Male
Age at diagnosis: 17
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 I, I'd just met, you know it was'. I'd just met a guy after my first relationship and that was then and you know I was 17, I just did my first year of A-level's so I was still at school. And then three months on from when we met, I suddenly just became really, really ill. I had PCP, I had pneumonia. I had a whole barrage of tests on my body to find out what was going on, and took' they took the gland out of my neck because they thought it could be cancer. I progressed very rapidly. And at the time I didn't know this.

So you didn't know, you had these illnesses but you didn't know what they were?

I didn't know what they were, I was hospitalised for months, I had PCP, pneumonia, CMV, all of the Aids defining illnesses you need. You know CD4 dropping below 200 within the space of one year. When I had that diagnosis though they, they, the doctors said to me don't worry you have ten years of good health. But I didn't realise that when you actually do the research on the studies, 3% of people will develop Aids very rapidly.

So you were getting these classic Aids illnesses, then, did the doctors know?

They thought the likelihood, you know because I only had two partners it was very low risk. They also' you know I mean, and I think the major concern, that's why they did the biopsy on my neck, you know on my gland there, was cancer. That was more in their forefront of their mind, you know glandular fever type illnesses, in my whole body all the lymph nodes were swollen. You know in my thinking if it was cancer I could be dead in a year, yet with HIV the prognosis is, you know somewhat better.

Yeah. And so, but they did do a HIV test and?

It was just very routinely, I had no counselling, no preparation, it was'

Were you asked about it?

I was just told that this was a routine test, so they just wanted to make sure I didn't have, you know this illness. Take it off the list of possibilities, because they wasn't sure what was going on within my body. So I had no real kind of understanding of what HIV or Aids was. I just knew if I got it I was going to die because that was the image that is kind of projected through the media.

OK and so then the test came back positive?

Well yeah a week later the doctors then asked me to come back in for more tests, so, you know they.

All right, OK.

Yeah.

What was that, I mean getting the result, what was that like?

[laughter].. such... I'm sure everybody else will tell you it's just earth' you know earth shattering. Anybody who gets a diagnosis of any illness you know you just'. It's like having the rug pulled underneath you, your whole world. You know I was at the age of 17 when my life was just beginning. I'd just started to look at my future. I was planning for university, I was just making decisions of where I was going to go. And to be told that there's this possibility of a death sentence hanging over me and then I was rapidly progressing to Aids it was just scary as hell.
 

It can be very upsetting to have physical symptoms that are not explained, or be given a diagnosis for a condition that has no clear treatment. One young woman started having abdominal pain at age fourteen around the time of her period. The pain got worse as time passed and remains unexplained. Her condition is described as 'chronic pelvic pain'. A young man was told that he had CFS/ME but was told that there was no treatment apart from plenty of rest.

 

It has been very difficult to live with physical symptoms and not really know what it is causing...

It has been very difficult to live with physical symptoms and not really know what it is causing...

Age at interview: 28
Sex: Female
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I think about 1990, no when I was about fourteen, I began my periods when I was about eleven and, and I think it, pain sort of was progressive from there forward, more noticeably when I became sort of fourteen, fifteen when the pain seemed to be, I used to get a lot of abdominal pain around the time of my period. I just didn't seem to be coping well around the times of the month, sort of mid my period time and I was having, it was just awful abdominal pain and I went to see my, my parents took me to see my GP  at that time and I think and I think a great deal, at that point, at the time, the GP sort of put it down to psychological problems, that it was more psychological than it was physiological. That it was just normal growing pains, period pains maybe, normal but interpreted differently and it was just something that I would grow out of and it would be something that I'd come to terms with. But it continued to get progressively worse and I became more and more distressed by it and it was affecting my daily life.

I always, whenever I have tests, I always expect nothing. Early on when, early on, when I first began to have all the tests, I think I was expecting, you know, especially because my symptoms, out of short I was so symptomatic of endometriosis, I the know the cystitis type symptoms around my periods and the pain when I opened my bowels, the blood, the mucus, the blood, the change in my bowel habits, the pain, you know, all the things that can quite often be associated with endometriosis. I think whenever I did have exploratory tests, treatments whatever, I just automatically thought that they're going to find endometriosis and of course they didn't. So I was gutted because nobody wants endometriosis, don't get me wrong, it's an awful disease to have and, you know, but it was an answer. Having chronic pelvic pain it's you're not getting any answers and being told that they can't find anything operable, or they say in terminology there's nothing operable or nothing specifically we can identify that may or may not be causing your pain. You know it, it's gutting, it won't, that's probably the wrong terminology, it's very upsetting, it's very despondent, you know, you feel despondent, even though it's good. Obviously it's fantastic when they don't find anything because that means that there's nothing, you know, there's obviously there could be a lot of things that could be a lot worse than finding nothing. So as time went on, as time goes on by going and expecting nothing, I suppose it makes it easier to cope. So it's quite a sad thing to think about really. If I analyse that to think that you're going thinking that they're going to find nothing, you think tomorrow's going to be exactly the same as today, so why are you going through the test in the first place, is in the hope that something's going to improve from having that test in the first, I don't know. But I don't know. Though my GP has now said, 'Just give up on the tests'.

How do you feel about that?

Frustrated but I understand why. If there was a point, you know, if, you know, what's the point of going through intrusive tests and having, you know, having every area of your body seen to whatever, to be told that they can't find anything. You know is it more despondent to go through that or is it harder to go through that than it is to accept that tomorrow is going to be the same as today and unfortunately, not unfortunately, you know that sounds negative, but, you know, you know what you coped with today, if it does get worse tomorrow, you can get through it, because you got through yesterday. Does that make sense?

Some young people knew that their condition could be passed on to their own children and/or had relatives with the same condition. Being a 'carrier' of a specific gene means that you can pass the condition on to a child. In some conditions this might only happen if the person you have the child with is also a carrier of the same gene. Young people with sickle cell disease and cystic fibrosis for example are very aware their partner might need to be tested before making decisions about starting a family. 

Sometimes people with asthma, arthritis, epilepsy and type 1 diabetes knew that they had someone in their family with the same condition while others said that they were the first one in their families to have it. However many conditions do not have any known genetic link and people wondered about what might have caused their illness. One explanation for ME/CFS is that it is caused by viral infections like glandular fever. HIV (the virus that can lead to AIDS) is an infectious virus that can be transmitted through unprotected [no condom] sexual intercourse (See our section on HIV). 

No two young people are exactly the same and long-term conditions affect people differently. For example two of the young women interviewed who had cystic fibrosis had few or no symptoms. One of them has never needed to have intravenous (IV) antibiotics. Both of them are aware that their condition can deteriorate following an infection but at present their condition is stable and doesn't really affect what they can do. However, the other two young women we talked to with cystic fibrosis have regular IVs. Young people with juvenile arthritis also had very different experiences, there are 8 different types of Juvenile arthritis. Of those interviewed one is stable but she has needed a hip replacement and has problems with stiffness and mobility in parts of her body; a twenty-three year old young man diagnosed at the age of two is still on steroid treatment while the other young man has been in remission for the last two years and expects to be gradually be taken off his medication. A similar picture emerges for those with asthma who are either improving, staying the same, or where their symptoms are gradually deteriorating.

 

He has been in remission for the last two years and his biggest fear is to relapse for a second...

He has been in remission for the last two years and his biggest fear is to relapse for a second...

Age at interview: 17
Sex: Male
Age at diagnosis: 7
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My biggest fears is in a way is this point in time. Because it's been in remission for two years is, 'Will it ever go back?' Because there's always a risk that you'll relapse and there's always a risk. Obviously they're going to start eventually taking me off all my medication that when they do you could relapse. And it's such a transitional stage anyway with moving away to university next year that the last thing you want is to go into remission again. So I suppose that's my only worry. But I try to keep positive and look at what I have now and where I was before and just keep positive and hope that everything keeps moving in the right way.

What have the doctors said to you?

They with it being in remission for two years they say it's a good chance that it won't relapse but with it being such a volatile illness there's always that risk. And they would if it wasn't for my exams and going away to university start taking me off some of the medication now. But we're going to wait until I get settled at university and then start cutting back the injections and the other medication that I'm on. And hopefully it should stay in remission but there's always an element of risk.

 

Says that his arthritis has remained the same since he was first diagnosed at the age of 2½. He...

Says that his arthritis has remained the same since he was first diagnosed at the age of 2½. He...

Age at interview: 23
Sex: Male
Age at diagnosis: 2
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Well I am now 23 years of age and I was first diagnosed when I was two and a half obviously I can't remember how it started because I was only a boy but from what I was told it just came on, you know, extremely suddenly, my arthritis. You know, so it, you know, was pretty much a shock. And in those you know days, you know, arthritis in younger people wasn't heard of. So at the time I mean, the doctors didn't know what was wrong with me and it nearly took about three, six months to diagnose. You know at the beginning I was put on steroids which was the only thing in those days. If I hadn't have had them then I would have died basically. But what ' but what to me is what is distressing is that I am still on the steroids today. And I can't get off the steroids. So I have been on them for what, for 21 years and there isn't a day that I haven't took them. So for me that is what is different about my arthritis is the fact that - is the steroids, the fact that for the last 21 years it is not getting any better.
 

Most of the young people we talked to said that they now accept their condition and, as one young woman with scoliosis put it, 'learn to work with it rather than against it'. They believe that they have no choice but to try to live everyday as positively as they can for themselves and for those they love (see 'Dealing with feelings and emotions').

Last reviewed July 2017.

Last update May 2012.

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