Cystic Fibrosis Awareness

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When people are poorly and feeling rubbish , (particularly men!!) it always feels as though its the worst illness ever. An annoying thing I find is when as Jeremy would say your on “social network sites” and people are moaning about the littlest illness they have. When you have children with disabilities that affect their day to day life and will do always, hearing people moaning about their latest ailment is frustrating because until diagnosed with a life changing condition……they really dont no how lucky they are.

The month of May is awareness for Cystic Fibrosis:-

Scarlett is 2 and was born 9th April 2011. She was overdue by two weeks and had to be induced as she was noted as losing weight. Scarlett was measuring at 38 weeks when in fact she was 41 weeks and 5 days. Her symptoms :- poor appetite, underweight, wheeze, cough, breathless, tired, sunken eyes. Regular IVs to keep infections at bay.
Every day Scarlett is on regular medication. As all mums/dads/ carers know, children dont normally take medicine well and will do anything not to take it. Scarlett has no option and has a vigourous daily routine of her medication :-
• Cefalexin Anti Biotics as a preventative
• Reflux medicines
• Creon (pancreatic enzymes) before anything containing fats, or vitamins as she is Pancreatic insufficient
• Dalivit
• Vitamin K Vitamin D and E as her body can’t absorb these naturally
• 2 lots of Nebulisered Anti Biotics
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Each day Scarlett also has daily physio which involves a vibrating vest, breathing exercises, chest percussion and trampoline.

Cystic Fibrosis affects Scarlett and her family every day. A lot to do and remember and in the beginning it is mind numbing but for Scarletts mum Natalie and particularly Scarlett it is just the norm. Something that little Scarlett just gets on with. A routine of medications, excercise, sometimes trips and countless stays in hospital. Drs have also prepared Natalie for possibly future complications that could arise in the future

Complications in later life:-
• Kidney Failure due to her medications
Pancreatic disease
• Poor Lung Function
• Nasal Polyps
• Fertility Problems
• Bone disease due to lack of nutrition
• Liver disease and C
• Diabetes
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To help with Scarletts daily Physio, it was advised that a Physio Vest would be of benefit. At a costly price of £6000 (not provided for by the NHS) Scarletts mum Natalie had to save herself and arrange numerous fundraising events to enable the best Physio for her little girl.
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5th May 2012 – Parachute Jump
To do a parachute jump you would either have to be mad or really love heights jumping thousands of feet up above from a moving plane. For Natalie it was a must do so Scarlett could have her Physio Vest, so along with Scarletts Uncle Lee that is what they did. An amazing achievement from them both in which it did raise the amount needed and Scarlett got her Vest
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Scarlett is nearly 3 and even living with such a life threatening illness she is such a happy go lucky girlie with an amazing smile that would melt your heart. Scarlett is one of lifes inspirations, a fighter who has been thrown an illness in which she carries on ….with a smile. She has amazing family/ friends around her including her 2 brothers. Most of all she has a fabulous mummy……who as you have seen throwing herself out of a plane is just the tip of dedication. A mummy who will go to any length for her baby girl.

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May is Cystic Fibrosis Awareness month……. any donations to Scarletts fund will be greatly accepted to pay for future equipment needed.

Cystic fibrosis is a genetic condition in which the lungs and digestive system become clogged with thick sticky mucus.

Symptoms usually start in early childhood and include:
persistent cough
recurring chest and lung infections
poor weight gain
Symptoms of cystic fibrosis usually become apparent in the first year of life.
An early sign is that an affected child’s sweat is unusually salty, which can be noticeable when you kiss your child.

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What Causes Cystic Fibrosis?
Cystic fibrosis is caused by a genetic mutation; specifically a mutation in a gene called CFTR. A genetic mutation is when the instructions found in all living cells become scrambled in some way, meaning that one or more of the processes of the body do not work in the way they should.
The CFTR mutation allows too much salt and water into cells. This results in a build-up of thick, sticky mucus in the body’s tubes and passageways. These blockages damage the lungs, digestive system and other organs, resulting in the symptoms of cystic fibrosis.

Who is Affected?
Cystic fibrosis is most common in white people of northern European descent.
It is estimated that 1 in every 2,500 babies born in the UK will be born with cystic fibrosis and there are over 9,000 people living with the condition in this country.
The condition is much less common in other ethnic groups
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