Subject index

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Long term health conditions >> Women 24+ >> Catherine - Interview 02 >> She was made aware of the importance of using contraception when having sex because the drug she takes for her epilepsy carries increased risks of pre

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 >> Women 16-18 >> Sarah - Interview 29 >> At the age of thirteen her consultant told her that she couldn't get pregnant while on medication.

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 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

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 >> Andrew - Interview 24 >> He feels reassured by his consultant and diabetes nurses and at ease to ask questions. Trusts their advice because he knows they are working in his be

Andrew has type 1 diabetes and Coeliac Disease. He was diagnosed first with type 1 diabetes when he was 11 years old and was diagnosed with Coeliac 3 years later. He changed his insulin regimen and he finds that the short-acting and long-acting insulin regimen gives him more freedom to choose when and what to eat. He needs to have a gluten-free diet because of his Coeliac which means that he cannot eat wheat, oats, barley and rye. Says that his mother makes very good gluten-free cakes!

Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> Says that the doctors and nurses she sees at the hospital for her sickle cell do really want to help her even when sometimes she thinks they might wan

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 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

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 >> Annette - Interview 31 >> Her biggest criticism is that consultants are ill prepared to advice young people about illegal drugs. She wanted to discuss this issue but felt judge

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 >> Women 16-18 >> Donna - Interview 25 >> At every stage of her illness she has felt reassured and well advised by her medical teams. Some consultants seemed to object if her little brother ha

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 >> Sarah - Interview 29 >> Talks about what it is like to see several specialist teams in different cities. Feels most comfortable with the team she has been seeing the longest.

Long term health conditions >> Women 16-18 >> Lucy - Interview 05 >> Says that she usually saw a different consultant every time she went to the diabetes clinic. She would have liked more regular appointments.

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 19-23 >> Elizabeth - Interview 01 >> It would have been helpful to see the same consultant when she went to the hospital. She should have been told that her scoliosis was a long term cond

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 >> Women 24+ >> Lara - Interview 03 >> She talks about the things she dislikes when she goes to see her consultant. But says that her epilepsy nurse is 'brilliant' and has given her lots of

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 >> Men 16-18 >> James - Interview 21 >> Newly qualified doctor want to show off what they have learned by using long and complicated medical words but his consultant is 'really nice' and tal

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 >> Men 16-18 >> Jamie - Interview 12 >> He does not always understands what the consultant is saying when talking to his mum during the consultation but afterwards his mother explains things

Jamie has a heart condition called hypoplastic left heart syndrome. He was diagnosed when he was six days old and underwent pioneering and life saving surgery. He gets breathless very easily and is not allowed to play any contact sports. Jamie absolutely loves football so at home he plays it in the garden with his sister and a neighbour.

Long term health conditions >> Women 19-23 >> Elizabeth - Interview 01 >> Says that doctor's language is 'over the top' and thinks that some can be insensitive and impersonal.

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 24+ >> Catherine - Interview 02 >> She was diagnosed age 15 and found doctors talking to her mother instead of her. She would have appreciated more opportunities to ask questions.

Long term health conditions >> Women 16-18 >> Charlotte - Interview 10 >> Her first children's consultant talked to her mother and not to her. Her adult consultant is nice but she finds the physical environment old and depre

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.

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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full list of topics

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