About Living With Cystic Fibrosis
My name is Sophia, I am now 20 years old and I am living with Cystic Fibrosis.
Sharing my life experiences, achieves and hear to inspire others!
Living With Cystic Fibrosis Description
My name is Sophia
I am 18 years old
I suffer from Cystic Fibrosis.
Cystic Fibrosis is a life threatening condition which can control a persons life. it is a genetic condition you are born as it is passed on via genes.
It is a fairly common condition that isn't published often, therefore a lot of people are unaware of what it is and how it affects a person.
Cystic Fibrosis is an internal condition which affects the majority of your body, mainly targeting the lungs, the digestive system and respiratory system. It makes a person vulnerable, meaning they are prone to infections in the lungs; this can lead to a matter of other situations.
Daily medication, physio treatment and other care is needed, including regular hospital appointments and admissions.
Cystic Fibrosis can vary massively in people who suffer from it, a bit like a scale from 1 to 10! However, that does not mean to say the condition is different, it shows that the genes are slightly different, but the impact on each and every one of CF suffers lives is the same.
I have always been into my fitness and sports, I believe it has helped me to be the person I am today and battle through my life long condition. I have decided to share my story and help others that are wanting to get fitter by being an inspiration.
If I can do it, so can you!
Reviews
#BGT #DisabilityAwareness
Top two finalist with disabilities so challenging you just could not imagine the level of courage it took those guys.
Absolutely fantastic, in tears watching The Lost Voice Guy wall away as the winner ‚̧ԳŹ
#disabilityAwareness #BGT2018
1 Week post CF Clinic & .. 10 MONTHS INTO NTM TREATMENT!
At Clinic my lung function has dropped by 7% which for me, is bad. There is no reason for concern, my doctors have scheduled in a CT & MRI Scan for September which will be a year since starting treatment, the scans SHOULD show positive change in my airwaysūü§ěūüŹľ
I‚Äôve decided to set myself another challenge.. ūüĎü HALF MARATHON MAY 2019! ūüĎü
... Week 1 of basic training completed ūüí™ūüŹľ
Why not set a challenge for yourself, a challenge doesn’t have to be physical.. the hardest challenges we face are all in the mind.
What & when is your challenge? ūüŹčūüŹĽ‚Äć‚ôÄÔłŹ
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Who agrees?ūüĎćūüŹľ
Happy Friday & the start to the Bank Holiday Weekend!ūüĎćūüŹľ
Next week, my mum had organised a surprise holiday as a part of my 21st birthday celebration.
So, before I head off.. to wherever I may be goingūü§Ē I want to spread the news that it is of course Cystic Fibrosis Awareness Month ūüéČ
... Thank you to everyone who had supported the Cystic Fibrosis Trust Charity and have already given donations through various events and sites. It is all used wisely and impacts many who benefit from your generosity.
Love to you all. Have a fantastic weekend! ūüŹčūüŹĽ‚Äć‚ôÄÔłŹ
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Happy Wine Wednesday everybody! Yes, it‚Äôs already midweek! ūüć∑
Each summer, I like to take advantage of the lovely weather (well.. the English version of summer ūüôĄūü§£) The past couple of days, I have introduced cycling to work back into my weekly routine! Yes you read correctly... cycling to work ūüöī‚Äć‚ôÄÔłŹ.
‚ÄúWhy do you cycle when you have a car?‚ÄĚ
... I get asked this a lot.
I actually enjoy it. Many people cycle to work, I see familiar faces each morning and it’s so pleasant. Any exercise (especially in the morning) is a fantastic way to start the day! It not only improves your health and fitness, it also generates a healthy mindset, good energy & helps you to sleep better too.
Why not create your own summer challenge?
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I made it to 21!
The most amazing weekend of my life. My family and the friends in my life right now are the most precious to me, thank you to everyone who made it a memorable birthday ūüćłūüćĺūü•āūüíē
Exactly how I felt after I‚Äôd achieved 3 months of IV Treatment ūüéČūüėā
ITS THE WEEKEND!! ūüéČ
Clinic is never fun, but that’s why I sit back, relax and try to make it home for the 5 hours I’m here!
I have gained majority of my muscle mass back from being back at the gym & my lung function is once again stable! This makes me so happy to walk away with a smile of my face ūüėä.
... YIPPEE!ūüėĆūüĎćūüŹľ
I am close to achieving the 7 month bench mark of intensive treatment! It has been very tough, and has required a lot of commitment.
However, I have truly proved myself wrong by getting through the worst of it ūüí™ūüŹľ I never thought I would be able to go through with this, ever.
HAVE A GREAT WEEKEND GUYS ūüíē
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Thank you so much to Caiius & the Sacrifice Pro Wrestling team for raising just over £300 for the Cystic Fibrosis Trust. Any money raised can go a long way to helping someone in need.
Many thanks ‚̧ԳŹūüĆĻ
#breatheeasy #Cysticfibrosistrust
This made my heart melt ‚̧ԳŹ
Appreciate and look after the things that cost nothing, because without those things.. you wouldn’t be you.
Cystic Fibrosis Awareness #Breatheeasy
NEBULISERS
DO YOU OR SOMEONE YOU KNOW USE A NEBULISER? WHAT ARE YOUR THOUGHTS ON THEM?ūü§Ē
BE A PART OF MY MY RESEARCH!ūüėä
... LEAVE YOUR COMMENTS BELOW! ...….………......................... ................................ So following my post, for those of you who are unsure on what a Nebuliser is.. I will try my best to briefly explain.
Nebuliser is latin, meaning mist. Nebuliser therapy has altered vastly over the years and people with CF are bombarded with a large, and often confusing choice of nebuliser systems to choose from.
The British Thoracic Society and European Respiratory Society formulated nebuliser guidelines. The guidelines aim is to assist the CF clinician to choose the most appropriate nebulizer device for the required drug, and the individual receiving therapy.
I use an E-flow. This is extremely advanced to what I used to use as a child.
The therapeutic effectiveness of an inhaled drug depends on a number of factors but in particular how much bypasses the oropharynx and deposits in the lungs.
For some patients, Nebulisers can be more effective than IV treatment. I am starting to believe I am one of those patients.
I hope this helps, if you have any questions.. thoughts or comments I would be delighted to hear them and put them towards the research!ūüėäūüíäūüíČ
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Good Sunday Afternoon!
Tomorrow is the the start to a new year for 30 CF patients! ūüĆĻ
I have agreed to be involved in a research trial for 12 months. It is based on Nebuliser devices, to try and show the following;
... 1. How affective they are to our health 2. Do people actually use them...? 3. The impacts and how disruptive they are on daily life 4. How they can be improved AND MORE.
Me personally, I do 3/4 nebuliser treatments per day.
From tomorrow morning.. I will be using a chipped E-Flow Nebuliser which connects to a device on my wall. The device sends my data back to the hospital after every nebuliser I complete.
After 12 months, all of our data will be reviewed which will allow us to suggest improvements and benefits as a team moving forward.
I’m so excited to be involved in this trial, anything which may help and benefit other people’s lives I’m down for.
‚ÄúIt‚Äôs like being on Big Brother‚ÄĚ Wish me luck ūüĎćūüŹľ
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5 MONTHS OF INTENSIVE TREATMENT HAS PASSED!
It's flown past when I think about it. I had clinic yesterday and honestly I could not be happier with the results ūüėäūüĎćūüŹľ
It is very rare of me to say this.. but I am INCREDIBLY proud of myself ūüí™ūüŹľ
... Most importantly... NO GROWTH OF NTM MICRO-BACTERIA IN THE LAST 3 MONTHS!!! ūüĎäūüŹľūüĎäūüŹľūüôŹūüŹľūüôŹūüŹľūüôĆūüŹľū üôĆūüŹľūüėäūüėäūüĎŹūüŹľūüĎŹūüŹľ
Lung Function; 100% AGAIN!! ūüėÉ
Weight; Stable
Bloods; Good results considering the drugs
I HAVE NOT FELT THIS WELL, THIS POSITIVE, THIS HAPPY.. in a long long time ‚̧ԳŹ
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Looking for inspiration?
For January.. or the rest of your life, take a look at this ... ūüí™ūüŹľ‚̧ԳŹ
HAPPY NEW YEAR FOLLOWERS! ūüéČ
I am finally back at the gym! ūüí™ūüŹľ
It's been 6 months since I last went. It's time to get some Gin.. erm, I mean Gym & Tonic back in my life! ūüŹÉ
... It is your year to be a healthier you!!
Enjoy and appreciate good food.. experiment with recipes? Just remember, exercise should be at least 30% of your healthy routine! ūüėä
Exercise releases a hormone which increase positive and happy vibes.. but then again so does chocolate!!
SO GET THAT COMBONATION ROCKING!ūüėŹ ūüćę
ūüėė
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I AM SO HAPPY RIGHT NOW! ūüéČūüėÉ DAY - 64 of treatment.
My lung function is 100%/105! Holding nearly 4 litres of air. This is the most stable it has been since I was 14 year old!ūüėĪ
Currently I'm on; ... 20 tablets per day 2 nebulisers per day 1 airway clearance physio treatment per dayūüėį ALOT TO DEAL WITH BUT SO WORTH IT.
All this commitment to my new medication is paying off already and I feel a dam site better than before o started this horrible treatment plan. What a journey it has been. ūüė•
Hopefully my levels come back okay so I am able to remain on the drugs which seem to be helping me. ūü§ěūüŹľ
Yet to find out if the Micro Bacteria is still lingering in my lungs... IM NOT GIVING UP! ūüĎäūüŹľ
I shall be celebrating with some wine tonight ūüć∑ūüĎŹūüŹľ
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PLEASE TAKE A MOMENT TO READ THIS STORY ‚̧ԳŹ
What a Beautiful Morning!
Off to #Cornwall we go! So after everything I'm so ready to have this break. The excitement of being surround by a different scenery, rather than hospital rooms & busy cities.
ūü饂̥ԳŹ
massive eye opener! good luck with your treatment!
hats off to Sophia natale please support her and the awareness of cystic fibrosis
This girl is so strong, and kind hearted, amazing work! When you're with her you can't help but keep a smile on your face or hers! So proud of the work she's doing so selfless, incredible, I'm glad to know her very wellÔŅĹ
This girl is so strong and is an inspiration to others ÔŅĹ
Sophia is such a lovely girl, what she is doing is incredible and I hope this page gives people a much better understanding and awareness of cystic fibrosis, stay strong and keep fightingÔŅĹx
Sophia I haven't known for very long, but I've got to know her a little bit, she is kind and funny... VERY funny haha. Hope you are well, and what you are doing is great. Xx
Really helps you understand what others are going through, helping raise the awareness of cystic fibrosis.
Lovely girl and so down to earth, would recommend this page to anyone who is suffering from the same condition if they need support or encouragement.
Hope you all the best sweet. X
Living with Cystic Fibrosis is a great page, I have learnt so much about the condition and I feel everyone should definitely check it out!
It's a eye opener
If you've already met sophia you know she is the most vibrant, funny and full of life person you've met before. She deserves all the respect on the world, and yet sophia is still trying to raise awareness for other cystic fibrosis fighters. Big love sophia x
If you haven't met Sophia yet I so excited for you to meet this incredible human- she deserves every ounce of respect and love in the world for fighting her condition and for raising awareness of it ūüíĖ