Profiles

Here, you can find any of the interviews on this site.



Jo

Jo's youngest daughter, Evie-Mae, was born with Down's syndrome and was diagnosed with leukemia at 17 months old. She has a low platelet count meaning she can get tired easily. She also has breathing problems which get worse if she gets flu or flu-like illness. Since chemotherapy, Evie-Mae, aged 4, has been much better and does not get ill as often.

  • Background

    Jo is a housewife. She is married with three children. Ethnic background: White British.

  • Age at interview 38
  • Sex/Gender Female
  • Susan

    Ciaran has Down's syndrome which means he cannot explain to his parents when he feels unwell. He was also diagnosed with Duchenne's muscular dystrophy last year. He doesn't like to swallow medicine, so his parents usually give it to him through a PEG (a percutaneous endoscopic gastrostomy' tube which goes directly into the stomach), or as a repository. Ciaran seems to catch things more easily than others. Alongside the usual coughs and colds, Ciaran had double pneumonia last year, which made him ill for about 6 weeks. Ciaran's parents now have powdered antibiotics so they are able to treat Ciaran more quickly if he develops serious flu-like symptoms.

  • Background

    Susan lives with her husband and son, Ciaran, who is ten. She works part-time as a firearms licensing officer. She is White Irish.

  • Age at interview 50
  • Sex/Gender Female
  • Sarah

    Arthur is 4 and has Downs Syndrome which he was diagnosed with at birth. He was also premature, born at 34 weeks. He has no underlying conditions but does seem to be affected more than other children when he gets flu like illnesses. He has had two bouts in hospital with scarlet fever and tonsillitis. Arthur is non-verbal which makes diagnosis and communication about illness difficult, but he is learning to point to parts of his body which hurt during which makes it a bit easier. His mum says it is sometimes difficult to diagnose Arthur as he also doesn't like people looking in his mouth, although their GPs are generally very good and try hard.

  • Background

    Sarah is married and is a full-time mum. She used to work in admin, but stopped work since she had three children and after her son, Arthur, was diagnosed with...

  • Age at interview 37
  • Sex/Gender Female
  • Gillian

    Gillian's daughter, Judith is 11 years old and has complex medical needs. At birth, she suffered severe oxygen deprivation causing hemiplegia. The hemiplegia affects the left part of her brain and it has led to cerebral palsy, visual impairment and sub clinical epilepsy. She takes Epilim for her epilepsy.

  • Background

    Gillian was born in Ghana, she studied history and she is married to a priest. She has an eleven years old daughter and she is a homemaker. Ethnic background: white...

  • Sex/Gender Female
  • Clare

    Clare's daughter, Eliza was diagnosed with 4q Deletion Syndrome. She has several chronic heart conditions, including bicuspid valve and aortic stenosis. She was also born with a cleft palate, and she was diagnosed with Asperger's Syndrome. Eliza's health has improved significantly since she had her first major heart surgery at the age of 4.

  • Background

    Clare works as a part-time teacher. She is married and has two children. Her daughter is 11 and her son is 9. Clare and her family are part of Unique,...

  • Age at interview 46
  • Sex/Gender Female
  • Michael

    Michael's daughter, Ella has complex medical needs and at birth she was diagnosed with chronic renal failure (stage 4). She has several other conditions including gastric telangiectasia, hyperparathyroidism, lymphedema and Weber syndrome. She is on Thalidomide, Amlodipine, tranexamic acid, Omeprazole, Atenolol, Renvela, Alfacalcidol drops and sodium bicarbonate. Any infections such as flu or flu-like illness is treated with the utmost vigilance and care by parents and doctors alike because it could have severe impact on Ella's renal condition. Michael is in the process of adding Ella on the kidney transplant list and he is undergoing tests to see whether he would be a suitable donor.

  • Background

    Michael works full-time in retails and his wife works part-time as a medical secretary. They have two daughters, aged 6 and 4 and they are expecting their third child. Ethnicity:...

  • Age at interview 32
  • Sex/Gender Male
  • Hazel

    Oscar is 11 years old, and he was born with multiple underlying conditions including heart problems, club foot and hydronephrosis of kidneys. Oscar has had two heart operations; one to repair a hole in his heart, the other was mitral valve surgery. He used to be on prophylactic antibiotics, which has improved his health. He cannot take them anymore because of his warfarin treatment.

  • Background

    Hazel works as a full-time PR director. She is married with two children, aged 11 and 7. Her eldest child, Oscar was born with multiple underlying conditions. Ethnicity: White English.

  • Age at interview 41
  • Sex/Gender Female
  • Karen

    Karen's son, Alex has severe food allergies, and was diagnosed with asthma when he was 14 months old. Alex used to suffer from flu-like illnesses once a month when he was younger, but his condition has improved significantly since. Last year, Alex was involved in a clinical trial testing the usual flu vaccine spray in children with egg allergy, and although the trial is ongoing, Alex hasn't experienced any negative effects from the spray.

  • Background

    Karen is a part time teacher, and her partner works as a full time train driver. Their son, Alex is 6 years old. Ethnicity: White British.

  • Age at interview 50
  • Sex/Gender Female
  • Louise

    Louise's elder son, who is now 7, was diagnosed with type 1 diabetes at the age of 2. Her son received an insulin pump 6 months after his diagnosis, which has helped them monitor and manage his blood sugar levels. They usually check his blood sugar about 20 times a day, typically before and after meals, exercise, sleeping, or when he feels unwell. When he falls ill with a flu-like sickness, Louise's primary concern is to manage his blood sugar levels. Over the years, Louise and her husband have become experts in managing their son's condition, but they had to take an exceptionally proactive role in order to receive proper care for their child.

  • Background

    Louise is a part-time teaching assistant in a primary school. She is married and has two children, aged 3 and 7. Her partner works as a full time clinical analyst....

  • Age at interview 37
  • Sex/Gender Female
  • Adam

    Adam's son is seven years old and he was diagnosed at birth with skeletal dysplasia with short stature, developmental delay, eczema and probably asthma (recurrent viral induced cough and wheeze). Up to the age of four, his son was much affected by flu-like illness as he often developed breathing difficulties and chest infections that required hospital treatments including nebulisers, steroids and antibiotics. His current medication includes: Salbutamol 2-4 puffs 4 to 6 hourly and Becometasome 2 puffs when required.

  • Background

    Adam works as a taxi driver, is married and has three school age children. Ethnicity: Somali.

  • Age at interview 40
  • Sex/Gender Male