Friday, 8 September 2017

Cystic Fibrosis Trust

'The question is not how to get cured, but how to live'

Joseph Conrad 

In a week when social media is full of back to school photos, it seemed appropriate to write about the Cystic Fibrosis Trust.  As with other chronic but often invisible illnesses, parents have the usual concerns and fears about waving their child goodbye at the school gates but these worries are magnified and multiplied.  I recently had cause to learn more about Cystic Fibrosis and quickly realised how little I knew.

What is CF?

'Cystic fibrosis (CF) is a genetic condition affecting more than 10,800 people in the UK. You are born with CF and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without knowing.  

The gene affected by CF controls the movement of salt and water in and out of cells. People with cystic fibrosis experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body.
Cystic Fibrosis Trust website 

You can watch a video which explains CF in detail here.  The presenter of the video has CF and is waiting for a double lung transplant.  

People with CF cannot meet other people with CF


I was extolling the virtues of social media in my last post and it also plays a vital support role for those with CF and their families.  During times of crisis in my life I have always searched for other people in the same situation.  People with CF cannot mix with other people with the same condition because they can carry bugs in their lungs which, though not harmful those without the condition, can be very harmful to others with CF.  Therefore, sharing knowledge and building up a support network inevitably happens more often across social media than through direct contact with others in similar situations. 

Therefore when it comes to education, it is inadvisable to send a child with CF to a school if another person with CF attends that school.  This means a sharp learning curve for staff and other parents as they try to treat children with CF in the same way as their peers whilst limiting risk as far as possible.

The Daily Routine

  • People with CF may need to take over 40 tablets per day to help with their digestive system and to thin the mucus in their systems.  Some children will have a semi-permanent line fitted into their chest to allow for easy access for antibiotics. This will limit their ability to take part in swimming and contact sports.
  • Children at school are likely to face physiotherapy sessions both before and after school every single day and some will need additional physiotherapy during the school day.  Physiotherapy helps the child to clear their lungs of mucus and helps to prevent infection.
  • Coughs and colds are more of a risk to children with CF because their lungs are more vulnerable and can be damaged by repeat infections.  
  • It is inevitable that children with CF will have periods of absence from school due to regular clinic visits and it is also likely that there will be some periods of illness. 
  • People with CF often need an additional 1000 calories each day due to low digestive efficiency.  This can be difficult to achieve, particularly for children.
Of course, everyone with cystic fibrosis is unique and will have their own relationship with CF and their own range of symptoms. 

Sign up to be an organ donor!

I am writing this post during Organ Donation Week 2017.  Great steps forward in specialist care and treatment have meant that people with cystic fibrosis are living longer and healthier lives than ever before.  Despite these advances, many people with the condition will reach a point where they require a double-lung transplant to prolong their life. There is a shortage of suitable donor organs.  Approximately a third of all those on the waiting list for a lung transplant will die before they receive a donor lung.

The Cystic Fibrosis Trust 

When the Trust began in 1964, around 80% of people with CF would not reach their 5th birthday and 90% would not celebrate turning 10 years old.  Now half of those born in the UK with the condition will live to celebrate their 40th birthday and a baby born today can expect to live even longer.  

The Trust invests millions every year in research and provides information and support to those people facing CF.  The Trust campaigns to ensure the voice of the CF community is heard and the Trust is working towards a time when everyone with CF can lead 'a life unlimited by the condition'. 
If you would like to make a donation to the Cystic Fibrosis Trust as part of the fortycubed challenge, you can do so via this link.

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