Vaishnavi

My take on living with Cystic Fibrosis (CF)
P.s. It can get funny, sarcastic and sometimes emotional.

[Just Treatment 💊 @JustTreatment]

Thousands of children with #cysticfibrosis are suffering and dying because US company Vertex is charging up to $310k a year for lifesaving medicine.

Join us & @VertexSave in demanding global access to CF drugs now - add your name to the petition! ⬇ 🌍https://t.co/pBEkt8Y7gS

[Cystic Fibrosis Trust @cftrust]

This week we are thrilled to share our brand new film about #cysticfibrosis, which aims to help children, their siblings and friends to understand CF in a fun, interactive way!

https://t.co/WQjQOLSxou

[Cystic Fibrosis Foundation @CF_Foundation]

Worrying about medical procedures is common for many people with #cysticfibrosis. Discuss your past experiences with your CF team so they can understand what part of future procedures may be difficult and work on a plan with you.

[Just Treatment 💊 @JustTreatment]

✊ TAKE ACTION!

🚨 We & @VertexSave are calling out @VertexPharma for their deadly pricing of up to $310,000 for lifesaving #cysticfibrosis treatment.

💊 We're demanding access to CF drugs for everyone, everywhere!

✍ Join us & sign the petition: https://t.co/v3U9htORDX

[Vertex Save Us @VertexSaveUs]

1500+ SIGNATURES IN 24 HOURS 👊
Sign & share - the global CF family needs you 🫵

@VertexPharma are charging up to $310k a year, leaving 000s to suffer & die.

Join us & @JustTreatment in calling for an end to this injustice - sign the petition today! ⬇

https://t.co/o8oFdYJqpv

[Strawfie Challenge @strawfie]

US company @VertexPharma is charging up to $310k a year for lifesaving #cysticfibrosis medicine leaving thousands to suffer & die without treatment. I've just signed this petition demanding global access to CF drugs now - join me & add your name! https://t.co/3mYQ1uOB1X #cfaware

[Living Hope 💜 @NkhosiLa]

My fake smiles because I’m in so much pain to even smile but this is how I present my face of bravery.with a smile last slide shows how fake my smile is 🫠I’m in pain beyond words can explain every bit of me is screaming at me 😤😤😤😤

[Vertex Save Us @VertexSaveUs]

We demand lifesaving #cysticfibrosis medicines for everyone, everywhere! 🌍

@VertexPharma are charging up to $310k a year, leaving thousands to suffer & die.

Join us & @JustTreatment in calling for an end to this injustice - sign the petition today! ⬇
https://t.co/o8oFdYJqpv

[Vaishnavi @CFbites]

I saw England as a place for hope.. one of the few places that have access to better cf care and medication.. we deal with survival everyday.. we shouldn't have to struggle for medication to keep us alive #ReviewTheList keep the hope alive #cfcantwait

[Strawfie Challenge @strawfie]

These meds are for a child with #cysticfibrosis.

As things stand, when that child hits adulthood in England he will have to pay for his prescriptions. This is because when the exemption list was drawn up most people with CF didn't live to adulthood
#Reviewthelist @Jeremy_Hunt

[Strawfie Challenge @strawfie]

These meds are for a child with #cysticfibrosis.

As things stand, when that child hits adulthood in England he will have to pay for his prescriptions. This is because when the exemption list was drawn up most people with CF didn't live to adulthood
#Reviewthelist @Jeremy_Hunt

[Vaishnavi @CFbites]

CFBite 12: Oximeter readings are the scariest numbers I ever had to read.. believe me I did study advance math.. days when my oxygen was as low as 80.. pulse as high as 120.. terrified parents checking them very hour.. nightmares are made here folks #cfcantwait #trikafta4all

[Strawfie Challenge @strawfie]

Costs of production for CF modulators could be 90% lower than current US list prices*
*Source: @JournalofCF
⬇️
https://t.co/hXrIdqfF0h

HOW CAN CF COMMUNITY HELP?
The @CF_Foundation are talking about this situation. Advocate for your fellow CF patients in ALL countries #cfaware

[Strawfie Challenge @strawfie]

Pls RT - whatever country you live in #NoOneLeftBehind

@vihaan_cfindia @VihaanMom @CFbites @FQuistica @mecfassoc @CFgetloud @TanyaKoorts @bethdenniss @Bells50587538 @Cfsuperstarsmum @FiverosesTeam

[Vaishnavi @CFbites]

Everyday in the CF group I hear kids as young as 10 years old suffering.. it reminds me of my own struggle.. except I am old enough to understand.. doesn't make it any better.. nobody should go through this.. #trikafta4all #trikafta4india #cysticfibrosis #cfcantwait

[CYSTIC FIBROSIS INDIA @cfindiaofficial]

@strawfie @VertexSave @CFAware @vihaan_cfindia @CFbites @KnowCF @Beam_CF @ChildrensUnit @ECFSConference @cf_care Every CF patients, wherever they are; they deserve the best treatment. They can't be left to suffer. Please actively support access to Modulators to all CF patients. @MoHFW_INDIA @OfficeOf_MM @wbdhfw

[CYSTIC FIBROSIS INDIA @cfindiaofficial]

@strawfie @VertexSave @CFAware @vihaan_cfindia @CFbites @KnowCF @Beam_CF @ChildrensUnit @ECFSConference @cf_care Every CF patients, wherever they are; they deserve the best treatment. They can't be left to suffer. Please actively support access to Modulators to all CF patients. @MoHFW_INDIA @OfficeOf_MM @wbdhfw

[Strawfie Challenge @strawfie]

If you live in one of the 21 countries in Europe that have access to #Kaftrio please advocate for those still dealing with #cysticfibrosis without modulators.

Email your CF association & Vertex Pharma. Urge them to work with every country to make worldwide access a reality.

[CYSTIC FIBROSIS INDIA @cfindiaofficial]

We are waiting for such amusing news for India also. Will it happen? @OfficeOf_MM @MoHFW_INDIA will sufferings of CF patients in India will get a chance to try Trikafta.

[Strawfie Challenge @strawfie]

@CF_vs_Everest Bang on Nick. Lack of infrastructure in some countries is a huge issue. But let's keep this topic front & centre because #CFCantWait @CF_Foundation @cftrust @ECFSConference @VertexSave @Bells50587538 @Magorza24718993 @genhandley @2000powodow @SrbijaCf @christine_noke @TanyaKoorts

[CF News Today @CFNewsToday]

• This was the most read article this week on our #CysticFibrosisNewsToday website! Have you read it? •

A UK data study estimates that only two-thirds of actual CF patients globally have a diagnosis and 12% are using newest modulator therapy. Read more:
https://t.co/3ySeCsA3MW

[Vaishnavi @CFbites]

CFBites#12: Having CF changes you.. slowly.. physically and mentally.. u lose urself.. ur confidence.. ur social life.. ur ability to feel normal feel included.. its hard for others to see this specially when no body knows what CF is #cfgetloud #cfawareness #cysticfibrosis