What A Cystic Fibrosis Patient Wants For Christmas

What A Cystic Fibrosis Patient Wants For Christmas

What A Cystic Fibrosis Patient Wants For Christmas

Before we go any further, wherever you are and if Christmas is a part of your yearly celebrations, Happy Christmas to you and yours. If, like us, you are in Poland you are probably just after unwrapping the presents, tucked into your Christmas dinner and are about to settle down and watch TV, if you are lucky enough! Christmas is a wonderful time of year but as we all know it can be a rough time for many, as it may be a reminder of those who are not around anymore, those who cannot afford to keep up with the spiralling costs and those who are homeless or ill.

For many a child in the western world Christmas means presents, but as you get older your needs generally become much simpler. As a cystic fibrosis patient I am just glad to be at home and celebrating another Christmas but here’s What A cystic fibrosis patient wants for Christmas.

What A Cystic Fibrosis Patient Wants For Christmas. The Most Wonderful ‘Enzyme’ Of The Year.

What A Cystic Fibrosis Patient Wants For Christmas

Today if you are a functioning ‘healthy’ individual it is a time to switch off. Maybe over- indulge in food and drink and do nothing more than just sit on the sofa. As a cystic fibrosis patient I will most probably do the same, but for the thousands of us sufferers around the world we still need to do our daily routine to keep well. For some, like me, it involves little more than an airway clearance routine and taking oral medication twice a day and with meals. For others it will involve a much lengthier and exhausting process involving nebulisers, oral and intravenous medication and breathing exercises.

Christmas sadly doesn’t provide a day off for a patient or family members whatever your treatments may involve. Regardless we are a tough bunch who get on with things but sometimes it’s good to have a good rant. For now here are some of the things What A Cystic Fibrosis Patient Wants For Christmas.

A Cure

What A Cystic Fibrosis Patient Wants For Christmas

Why not start with the best present any of us patients, family members and friends could ask for, a cure for cystic fibrosis. Just imagine a world without treatments, digestive issues and lung issues and all the other stuff that this illness brings. Imagine the possibilites to curing other diseases if a cure for a complex genetic condition like CF can be found. I personally hope there will be a cure, not solely for me, but for the unborn children and young kids who are starting out on this rough road. I have been quite fortunate, if you have been reading any of my blogs, lived a full life, travelled, fell in love and done many things ‘healthy’ individuals my age have achieved or wish to achieve.

Opening up about my condition via the world wide web has been great but it has been difficult. Connecting with other CF sufferers around the world and their families has been uplifiting as well as heartbreaking, especially when you see innocent babies battling this condition before they have even crawled. With the introduction of medications such as Kalydeco and Orkambi we have to believe that a cure is somewhere on the nearby horizon. I would swap all the fancy bicycles, money, computers, Iphones, cars and jewellery for this one thing.

What A Cystic Fibrosis Patient Wants For Christmas Coughs and Sneezes Spread Diseases!

For The Public To Practice Better Hygiene

What A Cystic Fibrosis Patient Wants For Christmas

First rant coming up, hygiene, specificially the lack of it when it comes to the general publics! Now I’m not saying I’m perfect, we all sometimes take shortcuts when it comes to hygiene. Some days we may not feel like showering, especially after a night out or when feeling sick, but for me I still always try to upkeep the best hygiene standards at all times. I don’t know if I was born with this or is it because of cystic fibrosis but I think it is a mix of the two.

I’m probably bordering on obsessive compulsive when it comes to hygiene. I like to make sure my body and oral hygiene are the best it can be to make myself feel good but also to respect people who are around me. Now I can live with people who may not wash every single day but coughing without covering your mouth, sneezing directly in somebodys face and not washing your hands after the toilet, really, really annoys me and I’m guessing most of the CF community!

Our illness means that our immune system is weakened and our lungs can colonise life-threatening bugs. Many infectious bugs can be caught in the environment but many are contracted from people being sloppy with their hygiene. We understand people catch cold and flus but when you pick your nose or cough up phlegm in our direct vicinity, this is certainly dangerous and inconsiderate. Next time you are out and at that toilet urinal make sure you wash your hands or at least please don’t attempt to shake my hand!

What A Cystic Fibrosis Patient Wants For Christmas What About a New Pair of Genes!

 

Travel Insurance for ALL

What A Cystic Fibrosis Patient Wants For Christmas

As a keen traveller I love nothing better than planning and taking journeys home and abroad. Look through our blogs and you will see the many fascinating destinations we have travelled to around the globe, last count was 86 countries, and hopefully more to come. As a CF sufferer hitting the road can prove challenging, particularly for any long periods of time as I must ensure I have adequate medication, not to mention keeping fit and healthy before I leave. The one issue many of us with the travel bug and with the condition face is travel insurance, many companies just don’t even quote us and when they do they quote figures that would make your eyes water.

The holiday and accommodation in most cases is cheaper than the insurance quote! Thankfully some companies do seem to be offering help, for our UK sufferers there is a company, Travel Addict Insurance, who we have partnered with. It’s worth your while giving them a call quoting Continent Chasers, and hopefully they can help with your travel insurance needs with long term illness. For the other companies out there we hope you can help make travel insurance for serious illness more easily available and affordable going forward.

What A Cystic Fibrosis Patient Wants For Christmas Upping the Anti

 

Stop Abusing Antibiotics

What A Cystic Fibrosis Patient Wants For Christmas

Now maybe this is just an Irish problem but since I have been a child, and somebody in the neighbourhood is sick, the first advice they usually receive is “get an antibiotic”, yes antibiotics are wonderful drugs and they can be vital for many people, not just us with cystic fibrosis. However when a person is only suffering from a cold or mild flu and they reach for the antibiotics, this is a problem. It is only in recent years that the negative effects of widespread antibiotic use has made the public sit up and notice. Nowadays many infections which were once easily treated by antibiotics in the past are now becoming resistant. This can pose major healthcare problems with the rise of MRSA and antiobiotic resistant bugs on the rise.

This is a problem everybody needs to face up to, the medical profession, the general public and us CF sufferers who rely on antibiotics to help keep us functioning in times of sickness.  Next time you feel unwell really ask yourself, can you not eat a little healthier? Rest a bit more or simply question your doctor if he prescribes an antibiotic without doing much investigation. If you must take antibiotics please, please finish the course. If the Doctor or medical professional tells you two weeks, take them for two weeks. Yes you may feel better after a week but it’s no time to stop as you must ensure those bugs are totally eradicated and not building up a strong resistance. Over use of antibiotics is a major public health issue, trust us cystic fibrosis patients we know enough about them to fill an encyclopedia!

What A Cystic Fibrosis Patient Wants For Christmas Seretide’s Greetings

 

Better Medication Packaging

What A Cystic Fibrosis Patient Wants For Christmas

This may seem a little trivial and ungrateful but hey I love a good rant as you might have noticed by now! We are fortunate to live in a world where modern medicine is improving each day and new medications are being developed to help cure and treat many ailments. As a cystic fibrosis patient I am a pharmacists’ dream. We require daily medications to keep as healthy as possible.  As I have mentioned above I am quite fortunate to not require a vast array of medications, however this can change year on year. For the few medications I do need I am grateful and pleased that they do their jobs. From the enzymes which help me break down and absorb vitamins and minerals from my food to the wonder drug Kalydeco, which has improved my lung function and many of the other symptoms of the condition.

I was criticised before for saying it is the closest thing to a ‘cure‘ found for the illness, but I stick by this statement.  The improvements in my body since my first pill back in 2013 has been quite noticeable. For any of you lucky ones on the treatment you may have one little complaint, the packaging can be quite frustrating. Those peel back foil covers which always seem to open incorrectly and not how they should do. This has provided much amusement with the CF community on many forums and hopefully Vertex might solve this problem and give us an early Christmas present for next year!

 

More People to Become Donors

What A Cystic Fibrosis Patient Wants For Christmas

What better gift can you give someone than the gift of life? Sadly this involves a person dying and family members and friends mourning the loss of someone special. I guess it is fair to say that you don’t appreciate organ donation until it affects you or somebody close to you. Upon my diagnosis at 17 with cystic fibrosis I became immediately aware of the possiblility I might require a lung transplant in the future. Thankfully at 35 I am still living with my own lungs but many other sufferers anxiously await that new gift of life.

It is painful to see many waiting, waiting and waiting with many dying before they receive vital organs. If you are reading this I hope you or your family never need to go through the organ donation process but by simply signing up for organ donation you could be helping many families out there start a new life. We all want to be remembered positively when we leave this earth, what better, selfless gift can you give another human being than the gift of life?

What A Cystic Fibrosis Patient Wants For Christmas Road to A Cure

 

A Cure

Donate Continent Chasers

No it is not a misprint, I understand I have mentioned this above but simply put it is all I want for Christmas for me and all those touched by this condition. Wouldn’t it be great to breathe normally, eat without tablets, sail through medicals and say goodbye to hospitals for a while. It may not happen in my lifetime but hopefully if this post is sailing around the dusty vaults of the internet in years to come many will be wondering, “just what was cystic fibrosis?

Us humans are capable of causing many problems but we can also do wonderful things. All we can do is hope. For now there is wonderful charities out there working tirelessly for a cure to happen as it is what a cystic fibrosis patient wants for Christmas. I’m sure they would love your support but sadly in this modern world they need money. If you can help it is only a couple of clicks away.

Are you or your family members affected by cystic fibrosis? If so we would love to hear from you? Perhaps we missed something from Santa’s List above or you would like to share your story? Feel free to contact us at anytime via our contact page or any of our social media outlets. Let’s spread the word of, and about the condition as awareness promotes change! Happy Christmas, Happy Holidays to you all and just breathe!

What A Cystic Fibrosis Patient Wants For Christmas

What A Cystic Fibrosis Patient Wants For Christmas

Check out more of our CF blogs here: http://www.continentchasers.com/cf-blogs/

Summary
What A Cystic Fibrosis Patient Wants For Christmas
Article Name
What A Cystic Fibrosis Patient Wants For Christmas
Description
What A Cystic Fibrosis Patient Wants For Christmas. Money, computers, phones, jewellery, perfumes, just some of the things on many peoples' Christmas wish list but what would I, a cystic fibrosis patient want this Christmas? Read on to see
Author
Publisher Name
Continent Chasers
Publisher Logo

6 comments

  • Definitely. I want all these things for my son who is 14 months today. @cfteamtobias on IG

    • Thanks for the comment and hope Tobias is doing well. Follow you on IG. Happy New Year to you all and good health.

  • Coral Stevens

    Thank you for the great read. I totally agree with it all. I wish all those things for my son (21). I would just like to add another wish for Orkambi/precision meds for the UK and other countries who don’t have it. Here’s the link to our petition if anyone would like to sign and share.

    https://petition.parliament.uk/petitions/231602

    • Thank you Coral for your kind words. You are 100% correct about the Orkambi situation, sad world we live in where profit comes before people many times. Hopefully you get many to sign the petition and that the drug and further drugs come available much easier! Best wishes to your son and keep following.

  • 25 y old CFer here. I spend 20-30 hours a week on my health – and that’s when I’m healthy! On top of the wishes you have (especially the cold etiquette one), would be for everyone to have a value of healthy living and its education. We need to learn what the difference between a virus and an infection are (and therefore what meds to take), so that even when someone has “just a cold”, they’ll decide not to go to that party so that 10 other people don’t also get it…
    Anyway, Merry Christmas from the UK traveling in North Africa! 🙂

    • Hello Maya
      Thank you for your comment, excellent point about education regarding viruses and infections. As CF patients we understand about these things but fit and healthy people take them for granted so understandly can be ignorant to the value of healthy living. Hope you are having a wonderful time in North Africa and please send us some pictures. You can join our CF Travel Group on Facebook to share them or via the comment section in the website. Merry Christmas and Happy New Year. https://www.facebook.com/groups/CysticFibrosisTravel/

Leave a Reply

Your email address will not be published. Required fields are marked *