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Rare Genetic Disorder Turns Muscle Into Bone: The Human Mannequin | Only Human
Only Human
Overview
This video follows Louise Wedderburn, an 18-year-old living with Fibrodysplasia Ossificans Progressiva (FOP), a rare genetic disorder that causes muscle to turn into bone, progressively locking her joints. Despite the physical challenges and a shortened life expectancy, Louise pursues her passion for fashion. The film documents her experiences, including a work placement at London Fashion Week and an internship at Elle magazine, showcasing her determination to overcome obstacles and build a career in the fashion industry, while also highlighting the potential for future medical advancements.
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Chapters
- Fibrodysplasia Ossificans Progressiva (FOP) is a rare genetic disorder where muscles and connective tissues gradually turn into bone, leading to joint fusion.
- This condition causes progressive immobility, making everyday tasks like reaching or moving the head difficult.
- Louise's FOP was diagnosed at age three, with symptoms worsening significantly after puberty.
- A minor injury or inflammation can trigger extra bone formation, a significant concern for individuals with FOP.
- The condition affects Louise's mobility, with recent swelling in her leg raising fears of potential wheelchair confinement.
Understanding the physical limitations and progressive nature of FOP is crucial to appreciating Louise's challenges and her drive to pursue her ambitions.
Louise demonstrates how she uses her arms differently for tasks due to their limited range of motion, relying on her left arm for lower reach and her right for higher reach.
- Louise finds solace and self-expression through beauty and fashion, using them as an escape from the difficulties of her condition.
- She has a strong sense of personal style, often choosing eye-catching clothes to express her identity.
- Her passion for fashion has grown into a significant ambition to work within the industry.
- Louise's desire to work in fashion is a way to prove her capabilities to herself and challenge perceptions.
This chapter highlights how Louise channels her energy and creativity into fashion, transforming a personal interest into a driving force for her future career.
Louise describes how wearing 'eye-catching clothes' allows people to see 'who I actually am rather than say the myth' associated with her illness.
- Louise secures a placement backstage at London Fashion Week, a physically demanding environment.
- She works with designer Nadine Merabi, assisting with hair and makeup for models.
- The fast-paced and chaotic backstage environment presents physical challenges and requires quick adaptation.
- Despite the intensity, Louise proves capable, even being put in charge of checking models' looks before they walk the runway.
This experience serves as a crucial test of Louise's physical and mental resilience in a high-pressure professional setting, offering a realistic glimpse into the demands of the fashion industry.
Louise is tasked with checking each model's hair and makeup before they go on the catwalk, a role that requires attention to detail and quick judgment under pressure.
- Louise undertakes work experience at Elle magazine, a dream opportunity for her.
- She assists with creating content, including a fashion feature and writing a beauty trend piece.
- The role requires her to adapt to an office environment, facing challenges like sitting comfortably.
- Her writing is published on Elle's website, marking a significant achievement and validation of her skills.
This internship demonstrates Louise's ability to apply her fashion knowledge in a professional editorial context, proving her potential as a writer and stylist.
Louise successfully writes a short feature on a makeup trend, which is then published on Elle's website, fulfilling a major career aspiration.
- Louise learns about promising genetic research for FOP, offering hope for future treatments.
- The research aims to block the faulty gene responsible for FOP, with potential clinical trials in the coming years.
- Inspired by her experiences, Louise decides to launch her own fashion blog and styling business.
- She feels more confident and creative, realizing she can pursue her dreams without necessarily relocating to a major fashion hub.
This chapter underscores the importance of hope through medical research and Louise's empowered decision to leverage her experiences and skills to create her own career path.
Louise decides to start her own fashion blog and styling business, using the confidence gained from her London experiences to take initiative.
Key takeaways
- Passion and determination can drive individuals to overcome significant physical and societal barriers.
- Fashion and creativity can serve as powerful outlets for self-expression and personal growth.
- Professional experiences, even challenging ones, provide invaluable learning opportunities and build confidence.
- Medical research offers tangible hope for managing and potentially treating rare genetic conditions like FOP.
- Leveraging digital platforms can open up career opportunities in creative industries, regardless of geographical location.
- Focusing on abilities and passions, rather than limitations, is key to achieving personal and professional goals.
- Supportive family and a proactive mindset are crucial for navigating life with a chronic condition.
Key terms
Fibrodysplasia Ossificans Progressiva (FOP)Genetic DisorderBone FormationJoint FusionMobilityFashion IndustryLondon Fashion WeekInternshipElle MagazineGenetic ResearchFOP Charity
Test your understanding
- How does FOP physically impact an individual's daily life and mobility?
- In what ways does Louise use fashion as a form of self-expression and a pathway to her career goals?
- What were the key challenges and learning experiences Louise encountered during her time at London Fashion Week and Elle magazine?
- What is the significance of the genetic research being conducted for FOP, and how does it offer hope for individuals like Louise?
- How has Louise's perspective on pursuing a career in fashion evolved, and what steps is she taking to build her future?