Cystic Fibrosis

Cystic fibrosis awareness Month

(In honour of Cystic Fibrosis awareness month all proceeds from our Etsy shop during the month of may excluding postage and packaging will go to the CF Trust)

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If you have never heard of Cystic Fibrosis or you want to learn more about the condition read on!  Here’s 20 facts to raise your awareness of Cystic fibrosis.

  1. Cystic fibrosis is a genetic disease that is caused by inheriting a faulty gene from both parents. This gene controls the transition of water and salt in and out of your cells. This in turn causes the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food.
  2. There is currently no cure for Cystic Fibrosis although medical advancements have been made to help people potentially live longer with the condition.
  3. Around 1 in 25 people in the UK carry a copy of the faulty gene with no effects and most without knowledge. Both parents must have a copy of the faulty gene to pass the condition on to their child.
  4. Just over half of the current population of people with Cystic Fibrosis in the UK will be expected to reach 41 years old or over. Due to medical advancement babies born with the condition today are hoped to live for longer.
  5. People who have Cystic Fibrosis have salty tasting skin due to problems holding salt in their cells.  In 1857 a passage in the ‘Almanac of Children’s Songs and Games from Switzerland‘ warned that ‘the child will soon die whose brow tastes salty when kissed’.
  6. One way to diagnose the disease is to do a sweat test. This test measures the amount of Chloride in the sweat released from your skin. A weak electrical current is applied to the area of skin to be tested in order to make the skin sweat. The sweat is then collected and tested in a lab to measure the amount of chloride in the sweat- an abnormally high reading means Cystic Fibrosis is present.
  7. In 1985 the gene causing cystic fibrosis was found to be in chromosome 7. This discovery paved the way for Professor Lap-Chi Tsui, Dr Francis Collins and Professor Jack Riordan to identify the specific faulty gene responsible for cystic fibrosis, in 1985.The team’s discovery of what they called the cystic fibrosis transmembrane conductance regulator (CFTR) is the single most important discovery in cystic fibrosis research to date.
  8. People with Cystic Fibrosis are not encouraged to come into prolonged contact with each other due to cross contamination and infection. This means that children with CF cannot be in the same class or year group at school with another child with CF, patients must have no contact with each other in hospital and all support groups are online or over the phone.
  9. All newborn babies in the UK are tested for Cystic Fibrosis using the newborn screening or heel prick test.
  10. Cystic Fibrosis affects many different organs and is managed using medication, physiotherapy, diet and exercise.
  11. One in every ten babies born with cystic fibrosis develops a bowel obstruction called meconium ileus at birth or within the first few days of life. In these cases the meconium (a thick black material present in bowels of all newborn babies) is so thick that it blocks the bowel instead of passing through. Babies with meconium ileus often need an urgent operation to relieve and bypass the blockage.
  12. People with cystic fibrosis are prone to developing bone disease (thin, brittle bones) due to a lack of nutrition caused by damage to the pancreas.
  13. Cystic fibrosis affects the pancreas because a build up of thick, sticky mucus blocks the ducts, reducing the amount of insulin produced and stopping digestive enzymes from reaching the intestines to aid digestion. This can cause malnutrition, leading to poor growth, physical weakness and delayed puberty. This can also eventually lead to CFRD- cystic fibrosis related diabetes
  14. In most men with cystic fibrosis the tubes that carry the sperm are blocked, causing infertility.
  15. Cystic Fibrosis can affect the fertility of females with the condition due to problems with nutrition and thicker vaginal mucus.
  16. Cystic Fibrosis can cause liver disease in around 6% of the CF population due to blockages in the liver ducts.
  17. Cystic Fibrosis causes damage to the lungs and poor lung function in a lot of cases, due to the thick mucus in the lungs, lung infections are common and can cause permanent damage to the lungs.
  18. There are over 1,500 identified mutations of the cystic fibrosis gene. Cystic fibrosis is a very complex condition that affects people in different ways. Some suffer more with their digestive system than the lungs. Others have no problem with their pancreas.
  19. People with CF should steer clear of Hay, mould, damp, enclosed garden centres and humid areas, stagnant water, jacuzzis, steam rooms and people with a chest infection to help prevent catching infections.
  20. People with Cystic Fibrosis often have slightly larger rib cages due to hyperinflation and increased lung use.

(Thanks to the CF Trust, CF Aware and the cystic fibrosis foundation for the facts!)

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