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Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> She was 9½ when she was diagnosed with arthritis but it wasn't until a couple of years later that symptoms started to deteriorate.

Sara was diagnosed in 1990 with Juvenile chronic arthritis. She has had a finger tendon repair & a hip replacement. Current medication Anti-TNF Humira injected 2/month, indometacin, co-codamol & Lansoprazole. Says that with her current medication she has more energy to do things like exercise. She attended a Tai Chi course for people with arthritis and really enjoyed it.

Long term health conditions >> Women 19-23 >> Sophie - Interview 15 >> On a busy day she would do her physio before leaving home and use her inhalers on the bus. Says that you need to prioritise and do the one that it is

Sophie was diagnosed with cystic fibrosis when she was 8 years old. She was taught by her parents to do all her own medications and treatments and encouraged to do sport. She is the Social secretary for her university Netball Cub. Sophie has a positive approach to her condition and says that she lives life to the full.

Long term health conditions >> Women 19-23 >> Elizabeth - Interview 01 >> She says that pacing and accepting her condition and limitations have helped her cope better with it.

Elizabeth was diagnosed with scoliosis at the age of 16. She now works for a Department of Health funded project. She says that as a teenager she 'rebelled' against her condition and stopped taking her painkillers. Her attitude now is to work with her condition rather than against it. She takes regular exercise and does a lot of walking.

Long term health conditions >> Men 19-23 >> William - Interview 22 >> He says that he knows and respects his limits and when in pain, he just rests until he feels better. He hasn't had a sickle cell crisis for the last t

William has lived with sickle cell anemia since birth. His mother and father have both got the sickle cell trait but his sister is not affected. When he was a child he remembers that he was in hospital many times. His condition is much improved now that he is older. He takes penicillin and folic acid everyday and says that he does not need to take medication but he does it because his aim is to prevent crisis.

Long term health conditions >> Men 19-23 >> David - Interview 08 >> He does not like relying on others to help with daily activities but knows when he needs help. Learning to drive has improved his life.

David has had twenty-seven operations in twenty-three years - the main ones including knee and hip replacement, leg straightening and spinal fusion. This meant that he has missed a great deal of schooling but he has always been determined to continue with his education. He finished his GCSE's, did his A' levels and has recently finished his university degree.

Long term health conditions >> Women 19-23 >> Helene - Interview 04 >> Sometimes she feels depressed about her sickle cell disease when she is ill and in pain.

Helene has had sickle cell anemia since birth. Sickle cell is when the blood cells are shaped like a half moon and they cannot pass through the veins so easily and this causes pain in, for example, elbows and knees. Helene takes penicillin and folic acid everyday and needs to avoid getting cold.

Long term health conditions >> Men 19-23 >> David - Interview 08 >> He was diagnosed with arthritis at 2 years of age. Suspects that it must be worse to be 'normal' and then diagnosed in your teens.

Long term health conditions >> Women 19-23 >> Kate - Interview 19 >> Had a hard time when she found out about her life expectancy but found talking to other young people through the Cystic Fibrosis Trust internet chat r

Kate was diagnosed with Cystic Fibrosis (CF) when she was 4 years old by a new consultant who spotted the symptoms straight away. Previously, she had been misdiagnosed with other conditions such as asthma and a milk allergy. Kate has very few CF related symptoms and although she has had the odd chest infection, she has never required intravenous antibiotics.

Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> She felt depressed for much of secondary school but has now learnt to focus on a series of goals and feels much more positive.

Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> Argues that people who smoke and drink do not deserve their free treatment. Says that people who have given up smoking and drinking feel much better a

Long term health conditions >> Women 19-23 >> Sophie - Interview 15 >> She is generally open about her cystic fibrosis and thinks that is it better to tell others the reason why she does not drink alcohol to avoid awkward

Long term health conditions >> Men 16-18 >> David - Interview 20 >> He says that his asthma would of course get worse if he were to start smoking and stop doing exercise. He drinks very little alcohol and tries to avoi

David was diagnosed with asthma at the age of 5 and his mother thinks that it was triggered off by a really bad cold. His asthma is mild and he is not on regular medication but he uses his inhaler before doing sports. He sees a specialist nurse once a year for check ups.

Long term health conditions >> Men 16-18 >> Tomas - Interview 09 >> Has played rugby since the age of six and has found that if he uses his inhaler before any game or training session he is usually fine.

Tomas has had asthma since he was six months old. Apart from asthma, Tomas has developed various allergies and he attends a specialised hospital clinic. He says that the work that Asthma UK does at schools has helped to improve the understanding of the condition among teachers and children.

Long term health conditions >> Women 19-23 >> Jodie - Interview 18 >> She has tried many sports including skiing and scuba diving. She does not cough so says she does not need to do her physiotherapy.

Jodie has cystic fibrosis (CF) and was diagnosed with CF related type 1 diabetes in her early teens. Of the two conditions she finds her diabetes the harder to control particularly because she has a very active life. She finds that the specialist care she received is brilliant. She remains thankful for all the nagging she got from her Dad and her children's consultant.

Long term health conditions >> Men 16-18 >> Joseph - Interview 17 >> Says that since the age of ten he has been restricted regarding contact sports and that this situation is normal for him. He used to do a lot of swimm

Joseph was diagnosed with Enthesitis Related Arthritis at the age of seven. After initial remission his condition flared up again and it became more difficult to control. He was started on a new drug, Enbrel and has been on remission for the last two years.

Long term health conditions >> Women 19-23 >> Elizabeth - Interview 01 >> She goes regularly to the gym and does at least 40 minutes walk everyday but says that she is self-conscious about her shoulders and does not go to th

Long term health conditions >> Men 16-18 >> Joseph - Interview 17 >> Says that he eats what he wants because he has always enjoyed his food particularly when his arthritis was bad.

Long term health conditions >> Women 16-18 >> Lucy - Interview 05 >> The only - and best - way to have sweets is after a meal, as a 'treat'. At one point she was eating too many sugary things and having lots of diabetic

Lucy has had type 1 diabetes for 11 years. Two years ago her mother was also diagnosed with type 1 diabetes. There was a period when her diabetes control overall wasn't very good. Lucy has been working with her consultant at improving her overall control by setting an action plan, like for instance 'losing weight'. She is feeling much better now.

Long term health conditions >> Men 19-23 >> David - Interview 08 >> Early on he decided that as a young disabled person he would need all the qualifications he could get to have a better chance of getting a job.

Long term health conditions >> Men 19-23 >> David - Interview 08 >> Explains the assessment process for Disabled Student Allowance and the help he got that enabled him to study.

Long term health conditions >> Women 16-18 >> Lucy - Interview 05 >> Says that her mother became less protective and more understanding after she herself was diagnosed with type 1 diabetes.

Long term health conditions >> Women 24+ >> Catherine - Interview 02 >> She says that because her father has epilepsy, her parents knew what to do and she wasn't overprotected or felt worried about it.

For many years Catherine stayed on a treatment that was not successfully controlling her epilepsy. And as a teenager she didn't know much about the different medications available. In her early twenties her new consultant put her on new medication that has improved the overall management of her condition.

Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> ME affected his confidence particularly when he was a teenager. Says that when he is well he feels more positive about things including finding a girl

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.

Long term health conditions >> Women 19-23 >> Katie - Interview 23 >> She thinks that things are easier because she has become less conscious about the way she looks as she gets older.

Katie was diagnosed with chronic eczema at the age of 11 but her eczema began to get worse in her teen years. She has had lots of different treatments for her eczema and has learned from experience what works and has improved her symptoms. She said that sleep is important as well as drinking plenty of filtered water.

Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> Health workers need to be gentle and to allow plenty of time for the consultation.

Long term health conditions >> Women 19-23 >> Jodie - Interview 18 >> Be aware teenagers will lie to you about taking medication but you just need to nag, nag and nag. Teenagers will grow out if it.

Long term health conditions >> Women 19-23 >> Sophie - Interview 15 >> Look at things from the individual patient perspective. Not all CF patients are the same.

Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Doctors should know more about ME because that is the first person you go to when you are ill. Young people suspected with ME should be referred to so

Long term health conditions >> Women 24+ >> Catherine - Interview 02 >> Listen to what young people are saying but also listen for what they are not saying. Ask questions about sensitive or embarrassing issues.

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the Long term health conditions discussion on MyYouthhealthtalk

Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

Long term health conditions >> Women 24+ >> Lynn - Interview 28 >> She divides consultants between the authoritarian and the dismissive types. She prefers her GP because she can talk to him on a more personal and inti

Lynn has lived with chronic pain for the last fourteen years. She experienced the pain before and during her periods. At first health professionals thought that she had endomietrosis. She had several exploratory tests and treatments, but she still does not have a clear diagnosis. She describes her condition as 'a chronic pelvic pain sufferer; or as a chronic lower pain sufferer with a black hole'.

Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> She used to feel different when she could not join in activities because of her sickle cell. However people do tend to be kind and helpful towards her

Mica has lived with sickle cell anemia since birth. Her Mum and her brother also have the condition. Her mother has played an important role in helping Mica and her brother to develop a positive attittude towards having sickle cell anaemia. Mica says that she now feels in control of her condition.

Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

Long term health conditions >> Women 19-23 >> Lynsey - Interview 14 >> Felt that previous boyfriends were a bit negative about her CF but her husband - who has a niece with CF - has been very accepting and supportive.

Lynsey was diagnosed with Cystic fibrosis at birth and says that her parents and now her husband are most supportive. She and her husband would love to have a child and they have discussed all the implications involved in such a decision.

Long term health conditions >> Women 24+ >> Lara - Interview 03 >> After she had a seizure while having sex with her boyfriend she talked and reassured him that seizures during sex are very uncommon.

Lara was diagnosed with myoclonic juvenile epilepsy when she was 17 years old. She became depressed and lost her confidence after diagnosis but she wasn't offered counselling. Her nurse has provided her with lots of support. Nowadays she jokes about her epilepsy giving it derogatory names and says that it is one way of coping with it. She has no problem in telling others about her epilepsy.

Long term health conditions >> Women 19-23 >> Katie - Interview 23 >> At university because people are looking after themselves you hear more about others living with a medical condition. Students are mainly understandin

Long term health conditions >> Women 19-23 >> Elizabeth - Interview 01 >> She describes how in a previous job her colleagues had been unsupportive and had made unhelpful remarks.

Long term health conditions >> Women 24+ >> Lara - Interview 03 >> After she had a seizure while having sex with her boyfriend she talked and reassured him that seizures during sex are very uncommon.

full list of topics

Diagnosis & learning more :

Physical problems, med's & managing your condition :

Life style :

What makes a good doctor and transition issues :

Living with it :

Talking about relationships :

Advice to others :