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Youth With Genetic Disorders

Watch the following videos and fill in your notes.

What 'genes' means.

A description of  the influence that genes have on our everyday lives, from the colour of your eyes to the way your body works, grows and develops.

Ashley's Story

Ashley has Treacher Collins syndrome meaning he was born without a jaw, cheekbones and ears. Ashley shows us how he gets around the daily challenges that his symptoms present and how he deals with the bullying that he has experienced as a result. 

Tamilore's Story

10 year old Tamilore has Sickle Cell Anaemia and often experiences debilitating pain. His limited physical health has a knock on effect on his education, hobbies and acceptance by others. Learn about the biology behind Sickle Cell Anaemia and how Tamilore copes with his condition.

Ellie and Tom's Story

In many ways Tom is just like other four-year-old boys, but often it’s his differences that people notice first. In this thought-provoking film, Ellie talks about what it's like to have a brother with Cockayne syndrome.

Tiana and Star's Story

Everyone gets a few bumps and bruises when they’re younger - it’s just part of growing up. But in this film we learn that Tiana, 7, has broken a total of eight bones and her sister Star, 10, has broken thirty-three.

Ryan's Story

Imagine having to spend 1.5 hours every morning just to take medicine to keep you healthy. Ryan actively chooses activities that help to alleviate his symptoms and prolong his life, from playing football to playing the trumpet. Learn what precautions Ryan has to take to keep his Cystic Fibrosis under control.

The following information and video are references from: Jeansforgenesday.org

Max's Story

Max has Hypohidrotic Ectodermal Dysplasia (HED), a condition that means he cannot sweat, has no teeth and very little hair.  In this film, Max explains what living with the condition means for him and how it affects his life.

 

Luke's story

Luke’s mum has Huntington’s Disease and he has a 50% chance of inheriting it from her. Will he take the test when he reaches 18 to find out if he has the faulty gene; Luke’s Story shows what it’s like for him to be grappling with such complex decisions and what impact his mum’s condition has on his life.

 

Alfie's story

Alfie, aged 14, was born with chronic granulomatous disorder (CGD), a rare genetic blood condition that stops his immune system working properly, causing him repeated bouts of serious infection often resulting in pneumonia and abscesses of the skin, tissues and organs. Faced with an option to cure him of his life-limiting and life-threatening condition for good, he shares his personal journey of his bone marrow transplantation.

 

Carys and George's story

Meet 13 year old George and his 10 year old sister Carys. Learn what life is like for them both living with Achondroplasia (sometimes referred to as restricted growth or dwarfism).  In this film, they explain what living with the condition means and how it affects them.

 

Connor's story

When Connor was younger he used to be able to walk. Here, he shares what life is like with Duchenne muscular dystrophy.

 

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