Subject index

Clip
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 >> 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 >> 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 19-23 >> Katie - Interview 23 >> The GP ignored her when she was talking about a new treatment. She found it rude and felt angry. She wants more information from health professionals

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 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.

Long term health conditions >> Women 16-18 >> Lucy - Interview 05 >> Teenagers need regular and frequent appointments. Doctors need to ask more questions about how you are controlling your diabetes.

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 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.

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 24+ >> Miriam - Interview 07 >> It is hard to communicate with doctors because you are worried. Doctors should recognise how difficult it is for us to talk to them and not judge us.

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.

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 >> Men 24+ >> Clint - Interview 26 >> Says that young people should know where sexual health (GUM) clinics are and what they need to do to avoid sexually transmitted diseases.

Clint was infected with HIV at the age of 17 from a partner and, at the time he lacked any knowledge of HIV. Clint rapidly developed the symptoms of the AIDS defining illnesses. Although it was initially suspected he had cancer (a common kind of presentation for AIDS), he in fact had a positive HIV result.

Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Her mum found an internet group for young people with ME. She felt scared to ask the GP for information and feels that her GP had no idea what to tell

Long term health conditions >> Women 19-23 >> Kate - Interview 19 >> When she was a teenager a doctor blurted out bad news about her life expectancy. Did not want to upset her mum but found talking to others with CF rea

Long term health conditions >> Men 16-18 >> Hassan - Interview 30 >> He was taken into hospital as an emergency, unable to breathe. His parents were told that it was time for him to die.

Hassan has Duchenne Muscular Dystrophy (DMD). Hassan was born in Pakistan but the family has relocated to the UK because he needs specialised medical care. With the help of his home tutor Hassan is writing a story about his experience of living with DMD. Hassan's message to other people living with a chronic condition is never to give up.

Long term health conditions >> Women 19-23 >> Annette - Interview 31 >> Talks about her initial reactions after she was diagnosed with epilepsy and says that the NHS is not well prepared to deal with the issue of drug taki

Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

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 :