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#aworldwithoutcf

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Shout out to all the amazing families in our community! 🙌⠀

#FamilyDay #familytime #bestwishes #cysticfibrosis #aworldwithoutCF

Managing medication side effects is an issue many people living with a rare disease experience. Chelsea has a useful tip: For me, it’s kind of like weighing pros and cons. I mark down how I feel after new meds. ⠀

This can help you to explain more effectively what is working or not with you to your clinic team.⠀

#raredisease #cysticfibrosis #aworldwithoutcf #spoonie #chronicillness #selfie #smile #awareness #care #medications #tips

I think one of the struggles of people with rare diseases is that there are so few of them, especially in provinces with smaller populations. Therefore, I feel that the provincial governments and health regions can sometimes neglect the clinics that people with rare diseases rely on for their care. This is unacceptable in a country with universal healthcare.⠀

#cysticfibrosis #aworldwithoutcf #spoonie #chronicillness #selfie #smile #raredisease #awareness

Madi feels good to be able to raise awareness for cystic fibrosis. It is a source of pride knowing she is helping further our shared goal of finding a cure. She has ventured on this journey since participating in her first CF Walk at 1.5 years of age. She has helped raise money and awareness by sharing her experience living with CF, since being a "super strider" at 3. She has spoken about CF and shared her story many, many times. One of Madi's proudest accomplishments was helping to gain coverage for Kalydeco at only 11 years old. She continues to share her experience at every opportunity. She has just started her own YouTube channel to share how you can live a positive happy life while living with cystic fibrosis. ⠀

Pictured here, Madi did a PSA with @benmulroney to promote the Walk to Make Cystic Fibrosis History. She has also done countless on-air interviews. She never misses an opportunity to spread awareness. Oh and yes she does get very nervous! ⠀

#cysticfibrosis #aworldwithoutcf #spoonie #chronicillness #advocacy #raredisease #awareness

I am a lucky man.
CF Canada Blog Contribution
Nurturing Relationships

http://www.cysticfibrosis.ca/blog/managing-relationships/

This selfie from Amanda is giving us wanderlust! If you could travel anywhere in the world right now, where would it be?⠀

#tbt #travel #travelgram #cocktail #worlderlust #cysticfibrosis #aworldwithoutcf

WE HAVE A WINNER!
Thank you to everyone that completed the online survery. All the feedback provided will be used to make this event the best that it can be for years to come!
Congratulations to FRAN DALZIEL, winning 2 tickets to the 2019 Hamilton Princess Ball! #princessballhamilton #endcf #aworldwithoutcf #cysticfibrosis #cure #winner

Happy Valentine's Day from this goofy couple and the cutest dog! ⠀

#momentsofmine #love #couple #raredisease #chronicillness #cysticfibrosis #aworldwithoutcf

I never would have thought that I could take a #coffee and be resting with this view in a hospital. Well it happenned today 😆
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Blood samples day 💉 first out of 12 weeks in a row to control my new anti fungus pills. Think I need a new dosage as I'm having a lot of skin rashs that prevent me to sleep good nights... Benadryl doesn't work also! Yeah....... -_- 2 sleepless nights since last Friday 👌
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Objective #CTGames2018 #CTG2018 #Vancouver
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#cysticfibrosis #19monthspostlungstransplant #aworldwithoutcf
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#whenindoubtpedalitout #cyclinglife #bikesporting #veloqc #velomtl #roadbike #cycling #roadcycling #cyclinghype #bike #training
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#whenindoubtswimitout #swimminghype #swimming #swim #pool #challenge #trainharder
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#CTGVancouver2018 #TransplantGames #CanadianTransplantGames #fitforlife #mydonormyhero

It's snack time for Chelsea! What are the small treats you give yourself?⠀

#snacktimeselfie #snacktime #cupcake #treatyourself #cysticfibrosis #aworldwithoutcf #chronicillness #spoonie

Le @juritour est arrivé sur Instagram! Suivez notre compte et aidez-nous à vaincre la Fibrose Kystique, un coup de pédale à la fois! 🚴‍♀️ #Juritour is now on Instagram! Follow us and help us vanquish Cystic Fibrosis, one bike ride at a time! 🚴‍♂️






#CysticFibrosis #FibroseKystique #CFLife #CureCF #65Roses #AWorldWithoutCF #Fundraiser #Fundraising #CFCanada #LeveeDeFonds #Juristes #Avocats #AvocatsAVelo #LawyersOnBikes

I had to start the #gym one day or the other! So I started today. It was a small session as I'm fighting 2 types of infection presently, so no need of fully emptying my energy. Did the Express circuit only at @econofitness . 18 minutes of cardio and 1 set of 1 minute on 8 different "machines".
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35 minutes, AVG 💓 @ 147BPM, Max 💓 @ 159 BPM
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Objective #CTGames2018 #CTG2018 #Vancouver
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#cysticfibrosis #19monthspostlungstransplant #aworldwithoutcf
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#whenindoubtpedalitout #cyclinglife #bikesporting #veloqc #velomtl #roadbike #cycling #roadcycling #cyclinghype #bike #training
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#whenindoubtswimitout #swimminghype #swimming #swim #pool #challenge #trainharder #econofitness

Madi and her buddy Noelle cheering on her favourite player, Auston Matthews and the Toronto Maple Leafs! ⠀

#gametime #hockey #sport #friends #thehappynow #cysticfibrosis #aworldwithoutcf #spoonie #chronicillness

Care for yourself. Rare disease or not. Care for yourself.
To me, this is a paramount notion and objective in my life; I try to care for and be kind to myself in all facets that I can.
By doing so, I can offer more care and compassion to others... rare disease or not. Be much bigger than yourself... #bebiggerthanyourself #perspective #lookwithintoofferwithouthesitation
Check this out from CF Canada...
http://www.cysticfibrosis.ca/blog/take-care-of-yourself/

"There's just something beautiful about walking in snow that nobody else has walked on. It makes you believe you're special." - Carol Rifka Brunt⠀

#tbt #snow #ohcanada #cysticfibrosis #aworldwithoutcf #spoonie #chronicillness #landscape #instaphoto #instalandscape

Update : Since the beginning of 2018, I lost my voice... I thought at first that it could be viral or something but I had no fever, no inflammation or pain in the throat. So I put that hypothesis aside fast enough. The transplant team detected 2 types of fungus in my lungs, that I have a paralyzed vocal cord and that there are 2 different types of bacterias into my lungs. Which one is causing the problem.....??? All of them maybe.
As mentionned above, I have an infection again, not controlled I think since last Autumn with the following bacterias : Pseudomonas + Sphingobacterium multivorum (S.Multivorum) ; Natural habitat : In the environment, in food products, in an aqueous environment of a hospital, such as; the sink, incubators, water from the tap, hemodialysis systems and all kinds of aqueous solutions.. The infection may be also caused by my paralyzed vocal cord as I may experience ASPIRATION as my right vocal cord can’t close. That may cause an aspiration pneumonia. Since the S.Multivorum can be found in the food products, food may be visiting my lungs with that bacteria... Such a pleasure!
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So, to wrap things around, I’m starting Cipro antibiotic, changing my anti fungus treatment for a more efficient one for 3 months (12 weeks of blood draw every week...), I’ll have a Pulmonary CT Scan soon, a Sinus Scan also. Finally, I DO NOT HAVE A BLOOD CLOT in my throat.
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Objective #CTGames2018 #CTG2018 #Vancouver
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#cysticfibrosis #19monthspostlungstransplant #aworldwithoutcf
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#whenindoubtpedalitout #cyclinglife #bikesporting #veloqc #velomtl #roadbike #cycling #roadcycling #cyclinghype #bike #training
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#whenindoubtswimitout #swimminghype #swimming #swim #pool #challenge #trainharder

I think advocacy and awareness should be at the forefront of our minds at the moment. The treatment of CF is so close to a breakthrough right now that raising funds or raising awareness could be the little push that is needed to truly find a cure.⠀

In the picture: going low in yoga but still continuing because the postures allowed for Juice box sipping.⠀

#cysticfibrosis #aworldwithoutcf #spoonie #chronicillness #selfie #smile #raredisease #awareness #advocacy #letstalk

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