What am I doing?

On the 17th of May 2014, at The Ship, Falsgrave, Scarborough, I shall be having all of my hair shaved off so I am just about bald, also I shall be having my legs waxed too. 

Why am I doing it?

At the end of 2012, going into the beginning of 2013, a friend of mine told me their sister, Zoe Phillips, at a young age of just 23, was seriously ill, and sadly didn't have long left to live. I was naturally very shocked, and she told me Zoe had suffered with a condition since birth, known as "Cystic Fibrosis", something I had never heard of. I mentioned Cystic fibrosis to many friends, and awareness of it seemed to be very low. It seemed it wasn't just me who was unaware.

First of all, here is the very sad story of Zoe Phillips and her devastating journey as a sufferer of Cystic Fibrosis.

Although I didn't know Zoe personally, I am good friends with her sister Gemma, the following account is written by Gemma, about her amazing sister.

"Zoe was very quiet, never told people about her condition, she never wanted people to feel sorry for her nor did she feel sorry for herself and never once moaned about her illness. At 6 years she was diagnosed with cystic fibrosis they only found out because she got Pneumonia, she spent most of the time in Scarborough hospital it was like a second home she needed constant tablets and needles. She had a box with a tube in her arm for them all to go in three injections, three times a day. At the age of 12 they found she then had a rare forum of diabetes which made her cystic Fibrosis harder, at the age of 14 she was transfer to Leeds hospital needing a liver transplant, she got a match had the transplant and made it through. She missed loads of school so pleaded to go back 2 years at school so should could do good in her GCSE and she did! She even got called names at school, a freak, a loser because she had to have a feeding tube up her nose to help her, Through all what was going she never let her illness stop her, she got a job in a care home then at the age of 17 she met someone desperately wanting a baby she asked what her chances are she then found out she has polycystic ovaries as well and was given a O.O1 % of having a child and was told if she did she would die carrying a baby, well at the age of 19 she found out she was pregnant she was so happy but so scared not for herself for the fact her baby might grow up without a Mum. Some may say she was selfish bring a baby into the world knowing she won't be there forever but I say she's amazing knowing it could have ended her life, she suffered bad so at 34 weeks they decided to give her a c.section and she saw her beautiful daughter Kaitlin a miracle! After she carried on working been a mum and even moved out to be a proper family, then last Year she had a turn for the worse she was told she was allowed a heart and lung transplant to extend her life by maybe 10 years, then she went into Leeds hospital as she normally did every month and went into a hypo and a transplant match wasn't found so Zoe went into a coma which has left her partly brain damaged, and after this she was told she could no longer have the transplant. She moved back home with Kaitlin so we could look after them both, through all this she survived and never moaned she was an amazing strong person and an amazing mum!!"

Sadly, on the 19th of January 2013, in Saint Catherines Hospice, with her family at her bedside, Zoe, at the young age of just 23, lost her fight against Cystic Fibrosis, leaving her beautiful young daughter without a Mother, and her Mother and Father without a daughter.

I couldn’t help but be moved to tears by this tragic life Zoe had fought through, and couldn’t believe so many people including myself had never heard of the terrible illness that caused it.

Desperate to educate myself, and make myself aware, I research Cystic Fibrosis and....

Did you know the following about Cystic Fibrosis? 

·         Cystic fibrosis is an inherited disease caused by a faulty gene. This gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food. Frequently a Cystic fibrosis sufferer will feel as though they are drowning and unable to breathe.

·         Around 2.5 million people in the UK carry the faulty gene which is roughly one in 25

• There is currently no known cure for Cystic Fibrosis
• Every week five babies are born with Cystic Fibrosis
• Two people die every week as a result of Cystic Fibrosis
• When the Cystic Fibrosis Trust was founded in 1964, children were lucky to live beyond five years old with Cystic Fibrosis. Currently, around half of the sufferers of CF are expected to live past 41.
• A cystic fibrosis sufferer will frequently have issues with lung function and are almost constantly at risk of lung infections.
• Cystic Fibrosis sufferers are also at risk of developing brittle bones, low bone density, joint pain, arthritis and bone disease and osteoporosis. 
• In both men and women, Cystic Fibrosis is known for affecting fertility and the conception of Children. If Children are conceived, they too are considerably at risk of developing Cystic Fibrosis in their lifetime.
• Sufferers of Cystsic Fibrosis also have issues with digestion, due to the mucus build up attacking the pancreas, leading to imbalance of insulin, and poor digestion. This in turn leads to excessive weight loss. Also, the sufferer is at risk of developing diabetes as a result of this.
• Additional complications in some instances include nasal polyps, sinusitis, Risk of nephrotoxicity and ototoxicity to kidneys and 
  hearing
  
  Sources

http://www.cysticfibrosis.org.uk/about-cf/what-is-cystic-fibrosis
http://www.cysticfibrosis.org.uk/about-cf/what-is-cystic-fibrosis/what-causes-cystic-fibrosis
http://www.cysticfibrosis.org.uk/about-cf/what-is-cystic-fibrosis/symptoms-of-cf
http://www.cysticfibrosis.org.uk/about-cf/living-with-cystic-fibrosis/additional-complications

Currently there is no known cure, the only options open to sufferers are treatments to relieve symptoms, or lung and liver transplants, so to prolong life expectancy. However, as Cystsic Fibrosis is a progressive illness, symptoms worsen drastically over time, with many additional complications, and often death.

In Zoes case, she lost the battle against this condition, so if I can help raise awareness and funds for an eventual cure by merely shaving my head and waxing my legs, then I would do it and more. Nobody should have to live such a terrible quality of life, nor have their life ended so prematurely.

The gloves are off; I want to join the fight to defeat Cystic Fibrosis, and to help remember Zoe and her tragic story.

Why are you shaving your hair and waxing your legs?

Anybody who knows me well would say I am as vain as vain gets when it comes to my hair. Never do I leave the house without spending about 20 minutes, styling it and combing it. If I am ever seen looking in a mirror, it is to check my hair, every time. Never before have I not had hair, my wife and family have even tried to talk me out of this, as they think I will look “ridiculous without hair”. So, if me looking ridiculous helps us beat Cystic Fibrosis, then that’s fine by me.

The leg waxing is simply because, it’s painful, and it’ll probably make a lot of people laugh.

Final note

It would mean so much to so many people if you could sponsor me, to help fund the Cystic Fibrosis Trust, to raise awareness, research a cure, and put an end to the suffering of many people and their families. Hopefully, with your help, no more children or people need suffer as Zoe did, nor have their life taken away so early.

Good health is a blessing, a blessing many take for granted, and a blessing many don’t receive. Let’s unite and help fight this terrible condition, so others can live a blessed healthy and happy life.

Thank you for reading and thank you if you do donate

God Bless you all

Ryan