Katie Beere holding the CF bag which represents the 1 in 25 chance of carrying Cystic Fibrosis

One of the UK’s most common inherited, life-threatening condition still has no cure. Around 10,800 people in the UK have Cystic Fibrosis, with symptoms that leave patients struggling for breath.

1 in 25 of us are carriers of the defective genes for Cystic Fibrosis (CF). If two carriers conceive, there is then a 1 in 4 chance of their child having Cystic Fibrosis.

This is what happened to one mother, Katie Beere who was unaware that she and her husband were carriers.

“He was quite poorly on and off to start with”
Katie Beere, Mother of Jake Beere

Katie, who is a mother of four, has one child with Cystic Fibrosis. Her 12-year-old son, Jake Beere, has the condition, but is living a good quality of life.

Katie says receiving Jake’s diagnosis was devastating.

Katie Beere, mother of four
Katie Beere, 38, mother of four

Katie Beere speaks about her son’s health after diagnosis

Cystic Fibrosis is a genetically inherited condition, where mucus builds up in the lungs. It can also impact other organs in the body, such as the pancreas and intestines. In the most serious cases, transplants might be needed to allow the patient to live.

CF patients perform physio therapy daily to clear their airways. This can be done in many ways such as physical percussion, vibrating vests and masks.

Katie’s son Jake uses a Positive Expiratory Pressure (PEP) mask to perform his therapy, which he does once or twice a day. This amount varies for each patient, as the condition affects everyone differently.

 

“Receiving Jake’s diagnosis was devastating”
Katie Beere, Mother of Jake Beere

 

https://vimeo.com/213853756

Jake Beere demonstrates his Positive Expiratory Pressure (PEP) mask

Katie is also part of the South Lincolnshire Cystic Fibrosis Trust Fundraising Branch. The branch was set up to help raise funds for research and to help improve the quality of lives of patients and their families.

CF Trust's duck badge
CF Trust’s duck badge

The money used from fundraising events can be used towards things like improving CF Centres.

Nottingham’s City Hospital built its own specialist Cystic Fibrosis Centre, The Wolfson Centre. The Centre was built in 2014 at a cost of £6.6 million pounds. It provides specially targeted CF treatment for up to 250 patients.

Within the centre there are large rooms with: exercise bikes, games consoles and large televisions so that patients can stay entertained whilst staying in hospital.

Patients also have both an indoor and outdoor gym. Exercise is recommended for some patients, as it acts as a form of airway clearance. There are also on-site chefs, specifically for the CF centre. A menu is available that patients can choose food from, which can be ordered at various times throughout the day.

A collection of pictures from the Nottingham City Hospital Cystic Fibrosis Centre

Kathryn Hodgson, double lung transplant, CF patient.
Kathryn Hodgson, double lung transplant, CF patient.

One patient who uses the centre is Kathryn Hodgson, 27, who had a lung transplant in 2015. She believes that technology has helped improve and save her life.

She says: “I wouldn’t be here if I didn’t have the transplant. It’s as simple as that”.

Kathryn Hodgson, CF patient at the Nottingham City Hospital Wolfson Cystic Fibrosis Centre

  • May is Cystic Fibrosis’ dedicated awareness month
  • Cystic Fibrosis (CF) causes thick mucus to form in the lungs
  • CF also effects other organs in the body such as the pancreas
  • CF is also referred to as 65 roses, as some children find it difficult to pronounce Cystic Fibrosis
  • Children are screened nationally at birth with a heel prick test
  • Screening can also happen before birth through embryo screening

“I wouldn’t be here if I didn’t have the transplant. It’s as simple as that”
Kathryn Hodgson, Cystic Fibrosis Patient

 

 

For more information on Cystic Fibrosis or if you want to donate, go to the Trust’s website here: CF Trust Website

If you would like to purchase the tote bag or duck pin go to: South Lincs CF Facebook Page