Wednesday, 31 May 2017

I have something to tell you....

Hey guys, Today I want to share something with you all that is very close to my heart (No pun intended). This is a very different post to what I normally upload. 

As you may or may not know, May is Cystic Fibrosis awareness month and I have been raising as much awareness as I can about Cystic Fibrosis.

Why am I doing this?

I just want to make it clear that I have never met or know anyone with this illness before. It doesn't run in mine or my husbands family. I don't have CF and neither does my husband... but we are BOTH carriers. 

We both had no idea we are carriers. 

Not until our son Zach was born 9th April 2017 and even then he was diagnosed with CF at 24 days old on May 4th 2017.

It was a BIG shock for us when we were told by Great Ormond Street Hospital about Zachs illness. They received his bloods from the heel prick test given 5 days after birth.

I had no idea what CF was all about. All I knew was that it was a very bad illness from back in the day. However, medicine has moved on ALOT and so has research. So, my son has the very best chance of having a very long and active life.

Unfortunately this can happen to anyone and I just want to make people aware, as I wasn't. It also makes me feel like I'm helping making people aware that CF is not all doom and gloom. 

So...

What Is Cystic Fibrosis (CF)?
CF is a genetic condition affecting more than 10,800 people in the UK. You are born with cystic fibrosis and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without even 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 ra
nge of challenging symptoms affecting the entire body












How do you inherit CF?
To have CF,  you need to have inherited two faulty copies of the gene (one from each parent), and as there are many different gene mutations that cause cystic fibrosis, each person with the condition can have very different symptoms depending on the two genes they carry. 

While people with CF often look healthy on the outside, each individual is battling their own range of symptoms on a daily basis.

How does CF affect the lungs?
The build-up of mucus in the lungs causes chronic infections, meaning that people with cystic fibrosis struggle with reduced lung function and have to spend hours doing physiotherapy and taking nebulised treatments each day. Exacerbations (a sudden worsening of health, often owing to infection) can lead to frequent hospitalisation for weeks at a time, interfering with work and home life. 

How Does CF Affect The Digestive System?
As the pancreas becomes blocked with mucus, enzymes required for digesting food cannot reach the stomach. People with cystic fibrosis often need to take more than 50 tablets a day to help digest food and keep respiratory 
symptoms in check. 

Cystic Fibrosis not only affect the lungs and digestive system but also other parts of the body. Some people with CF also struggle mentally with Anxiety, depression etc.

Currently there is no cure for Cystic Fibrosis. But research and medicine is advancing all the time, which in turn helps people with CF live normal lives and increases life expectancy. 

My life changed when Zach was born but now, my life means so much more. I get to love my son a whole lot more than normal, as well as supporting him and encouraging him to do better throughout his life. As well as caring for him when times are hard or bad.


Luckily for us we have a great CF team at Great Ormond Street Hospital to help us, help Zach and when he's old enough to take care of himself they will be there to help 
him.

If you would like to raise awareness of CF then please share this post. 

Or

If you would to support and donate so we can turn CF into Cure Found then you can do so by heading over to the Cystic Fibrosis Foundation which I will link at the bottom of this post.



Thank you so much for reading. If anyone has any questions
 regarding CF then please don't hesitate to tweet, email or pop it in the comments below.


Text was taken from the Cystic Fibrosis website - http://cysticfibrosis.org.uk




Cystic Fibrosis Foundation - https://www.cff.org


Cystic Fibrosis Trust - https://www.cysticfibrosis.org.uk


Jenni x



     

                       



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