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By Selina Hurley on

Cystic Fibrosis (CF) Awareness Week and Wear Yellow Day

This year’s CF Week (17 to 23 June) is extra special for Cystic Fibrosis Trust, who are celebrating their 60th anniversary. To mark the week, curator Selina Hurley shares more about Sammie, who's story we feature in the Medicine galleries.

It all began when groups of parents of children with CF came together with researchers, clinicians and experts to find out more about a condition that once had a very short life-expectancy. 

Cystic Fibrosis or CF is a genetic condition that affects a person’s lungs and digestive system, by producing additional mucus. This makes it difficult to breathe, causes chronic inflammations of the lungs and difficulty digesting food. While there is currently no cure for the condition, treatments for symptoms including physiotherapy, exercise, medication and mental health support are available. Genetic therapies are in clinical trial stages. 

In the United Kingdom, 11,148 people have Cystic Fibrosis. Each are looked after by a multi-disciplinary team, tailoring medications and treatments to their individual needs. There are over 2000 identified mutations of the CF gene, meaning each person has different experiences of the symptoms of CF.  

It’s been five years since I first met Sammie, who told her story in our Medicine and Treatments gallery about her life and experiences of CF. 

Sammie in front of items donated to the museum.

Amongst the medication packaging, were her Fitbit and her craft activities. Both are essential to her physical and mental wellbeing. Like everyone with CF, Sammie’s medications need constant tweaking to keep her symptoms in check so, I’ve been in touch, virtually, about how her life has changed since the gallery opened.

When the COVID-19 lockdown started, Sammie knew everyone’s lives were going to be different, but there were some unexpected positives. ‘Although it was repetitive, I loved the first lockdown, it was easy compared to being in hospital. At least I could be with the people I love, in my own home, getting on and doing the jobs we always talked about.’

Sammie documented her experiences of shielding during the COVID-19 pandemic and the rainbow crafts she made to show her support for key workers, which is now part of the Science Museum Group Collection. Ewan, her husband, was furloughed from his job and so for the first 3 weeks they had to shield from each other to protect Sammie’s health. A new puppy, Nelly, ‘my soul dog’ also gave Sammie a sense of purpose, even when Nellie started barking at birds in the garden!

During the pandemic, Sammie created a vlog to share her day to day life but to also reassure her family, friends and loved ones that she was doing ok. Looking back on her vlog now, Sammie sees a different person and that’s thanks to a new medication.

At the beginning of 2020, Sammie had a long hospital stay due to ill-health, where her lung function fell below expected levels. She was prescribed the new medication on compassionate grounds, which she began taking in summer 2020.

Sammie was one of the first people to be prescribed a triple therapy medication called Kaftrio, also known as Trikafta. By targeting protein production, this medication makes lung mucus and digestive juices less thick, relieving symptoms, improving lung-function.

Within a month, she felt the difference, she was breathing easier, not coughing as much which meant a better night’s sleep. Her hair and nails started growing more. She noticed the changes in her appearance, no longer having what she calls the ‘steroid bloat.’ Her voice is not as raspy as it once was. People with CF must eat extra calories to help their bodies have the energy they need, to fight infection, to cough on a regular basis and to ensure the take in nutrients from food. As CF causes mucus build up which blocks the flow of digestive juices, they need to take digestive enzyme replacements to help break down food. Sammie no longer needs as many calories, but exercise and nutrition are still important to maintain her health.

The Cystic Fibrosis Trust and community have campaigned tirelessly for access to these potentially life-changing medicines, estimating they could benefit 90% of people with CF. For the remaining 10% of people impacted by CF, work continues to find treatments for everyone, regardless of their type of CF.

Wearing her ‘vaccinated’ t-shirt, Sammie went for her first dose of the COVID-19 vaccine. She was delighted to get her vaccine doses as she said: ‘I could get back to my life.’ Most of all she wanted to be able to hug her family.

Sammie wearing her ‘vaccinated’ t-shirt

By 2021, Sammie was back at work part-time for a local company. Her work environment is designed to fit her health needs. The Perspex screens that were in use everywhere during COVID, remain in place, to protect Sammie from any infections from customers.

Sammie has also felt the benefits of changes to medical care that have arisen since the pandemic, with virtual hospital appointments reducing the need for face to face contact along with lessening travel time and time spent in hospital waiting rooms. Sammie was already participating in initiatives to make sharing information between people with CF and their clinical teams easier, including Project Breathe, a remote monitoring tool.

However, with everyone wearing face coverings, Sammie realised how much she relied on lip reading to understand people. Years of medication had caused nerve damage to her hearing. Hearing aids have amplified the sounds of the world around her, which has taken time to get used to.

Six-weekly hospital appointments are now a thing of the past. Sammie has not had a hospital stay since 2020. Her networks at her CF clinic that she has known for her whole adult life prove vital, as well as her family and friends.

‘I’ve started living again.’

Sammie now has her dream home. Her and her husband Ewan had always planned to eventually move to a bungalow in case Sammie’s health deteriorated but now it is a place to plan their future. She always knew that her story would be on display for many years at the Science Museum. Her family and friends often visit sharing their joy at seeing Sammie’s story.

‘When my display opened, I didn’t think I’d be around for 25 years, but now I think I will.’

From L to R: A sleeveless cropped top from the ‘Windmill’ costume used in the opening ceremony of the Manchester 2002 Commonwealth Games; A Barbie doll made in the late 1970s and 1980s; A bright yellow plastic raincoat issued to workmen in Engineering Depot of British Rail c.1984.

Today, the Cystic Fibrosis Trust encourages people to wear yellow and raise vital funds to help create a brighter future for everyone with CF. If you want to take part and need some inspiration, why not take a look at our collection?

Find out more about CF Week and Wear Yellow Day here.