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Long term health conditions >> Women 19-23 >> Lynsey - Interview 14 >> When she was younger she felt that nobody would want to marry someone who could die young. She has recently married her partner of 6 years.

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 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.

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.

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!”
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Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

Long term health conditions >> Women 24+ >> Lara - Interview 03 >> She had a seizure when she was in bed with her boyfriend at his college halls of residence. Was very embarrassed when she realised that he had called

Long term health conditions >> Women 19-23 >> Kate - Interview 19 >> She has been in a relationship for the last four years. They were introduced by a common friend and he knew she had a chronic condition.

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.

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Long term health conditions >> Friends >> Friends

Friends

Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> It was a massive confidence boost to attend a conference weekend for young people with ME.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.

Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> She differentiates between the 'being ill type of tiredness' and the tiredness that comes from physical activity and discusses how her ME affected her

Long term health conditions >> Women 19-23 >> Jodie - Interview 18 >> Finding out about her life expectancy made her not to want to do her treatment but the support and 'nagging' from family, friends and doctors helped h

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 >> James - Interview 21 >> His dialysis treatment means that he spends four days of the week in hospital. A year ago he was promised home dialysis but nothing has happened yet.

James has a renal condition called Senior Loken Syndrome and it means that his kidneys didn't develop as he grew older. James was diagnosed with his condition when he was eleven years old and since then he has spent much of his time on dialysis. Four times a week he goes to hospital to have dialysis and he is able to attend school two days a week. This condition affects both his kidneys and his eyes and James is now registered blind.

Long term health conditions >> Women 19-23 >> Annette - Interview 31 >> Discusses friend's attitudes, learning from own experience, giving up illegal drugs and the lack of communication she had with doctors.

Annettte was diagnosed with epilepsy when she was 15 years old. Before her diagnosis she was going through what she described as a 'very rebellious phase' and both drinking a great deal and taking illegal drugs. After her diagnosis she stopped taking illegal drugs and nowadays she hardly drinks alcohol at all. Family and friends have been very supportive.

Long term health conditions >> Men 16-18 >> James - Interview 21 >> He had a nasal feeding tube but asked to have one inserted in his stomach instead because he didn't like the idea of having a tube visible on his face

Long term health conditions >> Women 19-23 >> Jodie - Interview 18 >> Has a very good rapport with her children's consultant and his direct approach inspired her to learn more about her condition. She gave nicknames to a

Long term health conditions >> Women 19-23 >> Kate - Interview 19 >> Her children's and adult medical teams are very good, but she established a strong relationship with the medical team at the children's clinic she has

Long term health conditions >> Women 19-23 >> Elizabeth - Interview 01 >> Her scoliosis affects her social life because she often can't do the things her friends are doing. It also affects other everyday activities like carr

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 16-18 >> Joseph - Interview 17 >> When his arthritis was active he never knew in advance if he could go out or would have to cancel. Now in remission he does not need to plan ahead.

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 has had problems with her friends because she is not always able to go out. It is good for friends to see you when you are not feeling your best s

Long term health conditions >> Women 19-23 >> Annette - Interview 31 >> Her doctor said that strobe lights could cause a seizure. When she goes to clubs she tells them about her epilepsy and they usually do not use the str

Long term health conditions >> Women 16-18 >> Lucy - Interview 05 >> When she moved school she initially had a bad experience but her teacher encouraged her to give a talk to her class about her diabetes. Her new group

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 >> Women 16-18 >> Sarah - Interview 29 >> Her condition affects her facial features and when she moved schools some classmates bullied her but with the support of her mother and new friends sh

Sarah was diagnosed with a localised form of a skin condition called morphea in which there are well demarcated plaques of fibrosis restricted to the skin. In her case this affects the right side of her nose and the top of the right side of her forehead. Recently she has had surgery in which fat from her stomach was injected into the right side of her nose and her forehead and the cheekbones. Doctors have explained that she will need several similar operations before they reconstruct her nose an

Long term health conditions >> Women 16-18 >> Donna - Interview 25 >> Talks about the friends she made while having dialysis and how her friends from school were sometimes able to travel to see her in hospital.

Donna was diagnosed age 13 with a kidney condition called Mesangiocapillary Glomerulonephritis type II. After diagnosis she was on medication and remained stable for three years. But her condition deteriorated and she needed a kidney transplant. Her mother was her donor. Her sudden deterioration affected her physically and also emotionally. She became depressed and felt rejected and isolated from her then 'group of friends'.

Long term health conditions >> Women 16-18 >> Charlotte - Interview 10 >> No-one explained to her classmates about her epilepsy and absence seizures. As a result some thought she was an attention seeker and she lost friends.

Charlotte was diagnosed with epilepsy at the age of 13. She sees her consultant every three months and feels well supported by her. Her main problems are the frequency, till recently, with which seizures have occurred and the fact that her memory has been affected by the frequent incidence of her 'absence' seizures. Until three months ago Charlotte was having seizures twice a month and sometimes, even as frequently as once a week.

Long term health conditions >> Women 24+ >> Lara - Interview 03 >> She was furious when someone she has just met made an offensive 'joke' about people with epilepsy.

Long term health conditions >> Women 16-18 >> Sarah - Interview 29 >> Her condition affected the shape of her nose and forehead. Children at her new school kept staring at her and some made hurtful comments but her frien

Long term health conditions >> Men 19-23 >> William - Interview 22 >> His friends treat him the same and some know what to do if he were to have a crisis. He does not talk about his condition in college because thinks ev

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 >> Women 16-18 >> Mica - Interview 16 >> Friends saw her having a crisis but didn't know about her sickle cell. She explained it to them and they are very supportive. No one has ever been unk

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 >> Women 16-18 >> Lucy - Interview 05 >> She has told her friends about her diabetes and what to do when her blood glucose levels goes high or low. Her diabetes has also helped her make frien

Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> He talks to his other friends with ME about how he feels but won't discuss his health with his friends without ME because he thinks it is tiresome.

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.

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 :