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Cystic Fibrosis Canada  #aworldwithoutCF | #unmondesansFK

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If you had to describe yourself in one word, what would you choose?⠀

#chronicillness #spoonie #invisibleillness #butyoudontlooksick #spoonielife #cysticfibrosis #aworldwithoutcf

“Having a rare disease creates a lot of barriers, and when you throw in issues such as infection control on top of having a rare disease, it can make things even harder. Isolation, in my mind, is one of the toughest things about having CF. It’s hard to connect with people who have the same disease as you when there’s not a lot of us out there and you can’t see each other face to face. People with CF and within the CF community have had to learn how to connect with each other in creative ways in order to support one another. We’ve also had to learn how to become strong advocates for ourselves because CF is not a well-known disease. There are advantages and disadvantages to having to fight for things such as access to medication, specialized health care in your own community (when you’re perhaps the only one with CF in your community) and recognition of the seriousness of CF. Learning how to advocate for myself and how to break through the isolation CF creates are two of the most important things I’ve learned about having a rare disease.” – Kim Wood⠀

#cysticfibrosis #aworldwithoutcf #spoonie #chronicillness #raredisease #conversation #awareness #challenges #learningexperience #advocacy

Tell us, how do you cope with morning blues?⠀

#spoonie #morningselfie #cysticfibrosis #chronicillness #aworldwithoutcf

Ma deuxième question est : Comment les personnes ayant une maladie rare et qui sont éloignés des grandes villes comme moi font-ils pour gérer les déplacements et les hospitalisations, loins de leurs proches? Et plus précisément pour la communauté FK, avez-vous accès à des soins particuliers sachant que vous n'habitez pas proche des centres hospitaliers spécialisés en FK?
⠀

#maladierare #journeedesmaladiesrares #questions #conversation #fibrosekystique #unmondesansfk #spoonie #maladiechronique #paysage #champs #été

What is the last thing that you did for yourself? Was it a new haircut or did you buy yourself a gift? ⠀

#momentsofmine #forahappymoment #livethelittlethings #chronicillness #cysticfibrosis #aworldwithoutcf

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

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

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

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

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

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

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