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Patient Voices: Serious allergies

 

Serious allergies

The first project in the Terrific Teens programme of work facilitated the creation of Patient Voices Reflective digital stories in which storytellers explored the experiences of teenagers with serious life-threatening allergies and their parents. This project was funded by Imperial College Healthcare Charity.

You can read more about this project in the blog of Dr Claudia Gore at: https://www.imperial.nhs.uk/about-us/blog/empower-young-people-with-allergies-to-share-stories


Stories from teenagers with serious allergies

Sunshine
The list of things to which Seema is allergic has grown and grown since she was a tiny baby first diagnosed with a milk allergy. She is no stranger to anaphylactic shock but it has taken its toll on her confidence and self-esteem. A caring doctor, gentle nurses, wet wraps, regular injections, playing the piano and regular visits to warmer climes have helped her to cope with her condition.

Held at cheesepoint
Kyle’s allergies are so severe that exposure to milk, peanuts, nuts or eggs could kill him. Bullying and name-calling can also cause serious damage but Kyle has learned to deal with both his medical and his social challenges, coming to recognise his own strengths.

Elisha’s battle
Elisha was always different from her friends – but was it her eczema or her quietness that led her classmates to bully her? Gradually she realises that her eczema and her quietness are both important parts of who she is.

Tiger balm
Sarah had learned to manage the range of allergies from which she has suffered since early childhood,  but a severe allergic reaction in her teens was the beginning of a year during which she lost her confidence – and sense of identity. A hospital admission and a doctor who listened were the start of the road back to health and herself.

Small
Josh suffers from a number of allergies, as well as ADHD and hypermobile joints. Itchy, painful skin and bullying at school make life difficult, and having to give up Tai Kwan Do for fear of breaking something leaves Josh with few outlets. When he is also diagnosed with Eosinophilic Gastrointestinal Disease, life becomes really tough. Gradually, he’s learned to keep his physical symptoms under control – mostly – and he’s learned to cope emotionally by trying not to care….

Eczema girl
When Priya is bullied at school because of her severe eczema she eventually retaliates … it takes time for her to learn to cope with her severe allergies in more constructive ways. Along the way, she has help from a special doctor who manages to control her flare-ups and gives Priya the knowledge and confidence to understand what works for her.

Stories from their parents

Letting go
Letting go of their children is one of the hardest things most parents have to do. Sonya’s daughter, Seema, has suffered from severe allergies since she was born and Sonya has tried to protect her from the wide range of things that could make her ill – or even kill her. When Seema goes into Anaphylactic shock, it is difficult for both mother and daughter to overcome the fear and the worry…. But, in time, Sonya realises that Seema has to make her own decisions.

Invisibility
Steve’s son, Kyle, suffers from a range of severe allergies, which often make it difficult for him to attend school and participate in ‘normal’ childhood activities. Steve contemplates the lack of understanding and support, until they meet a doctor who understands… but what will happen when Kyle reaches 18 and is no longer under the care of a physician who knows him and understands his condition?

We’ll be fine!
Elisha’s short life has been plagued by itching, scratching, breathlessness, creams and a wide range of treatments. Marilyn’s baby daughter, born at only 25 weeks, has suffered from severe allergies all her life. Caring for her daughter and other family members has resulted in the loss of Marilyn’s identity but perhaps, with the right care and treatment, Marilyn can find herself again.

Our normal
Jacqueline reflects on her son’s wide variety of chronic-but-invisible conditions – rare and strange for many but normal for Jacqueline and her family. She makes a plea to health professionals to listen to what is normal and what is not and to see Josh as a person and not just a collection of conditions.

Finding the right person
Mary has suffered a number of losses and has had cancer. Sarah’s birth is the beginning of another set of challenges, with repeated infections and criticisms of Mary’s parenting. When Sara’s eczema worsens, Mary doubts whether she is the right person to care for her daughter – but is anyone? But then Dr Super Problem Solver comes along and everything changes.

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