Top Tweets for #nf2week
Nigel lived life to the full, unaware he had a mutation on his NF2 gene. Aged 47, the next 20 years took him from #NF1 to #NF2 to #Schwannomatosis to mosaic NF2, demonstrating the challenges presented to everyone involved in this rare condition: https://t.co/rZRRqofbh4
#NF2Week
With any lengthy treatment, it’s vital to take a day at a time & give yourself treats to get you through. Oscar’s latest session was fuelled by Vimto, reading ‘Where’s Wally’ & finishing with ice cream: https://t.co/e4jG37NLTL
#NF2Week #AvastinDiaries #NFSupport
@nf2biosolution1
Jo’s blog 7 deals mainly with Oscar’s cannulation problems - having a play therapist seemed to make a difference & will be the way forward: https://t.co/3k4pPvzZ1I
Jo’s blog intro mentions she has NF2-related #Schwannomatosis, what is #NF2SWN? https://t.co/CtCe9f8utP
#NF2Week
Kian was diagnosed with NF2 aged 10. He shares his #NF2 journey & inspirational path - training to swim in the Para-Olympics, extend his swimming career as a coach & inspire young people with disabilities to follow their dreams: https://t.co/5PuFs1Aijp
#NF2Week #NF2Warrior
Blog 5 covers Oscar’s 4th Avastin treatment, with a sensibly scheduled same day physio appointment, to reduce time off school. More treatment lessons learned for the next time: Expect the unexpected!
Read more: https://t.co/nvm9jHc1oJ
#NF2Week #AvastinDiaries #NF2Aware #NF2
Blog 4 is all about teamwork. From advice given by the #NFCommunity, Sam the community nurse going to Oscar’s school to take blood, the oncology team Anna & Dr Emmanuel, to Bluebell Bear. All have their role to play. Read more: https://t.co/95V8OA4Fkv
#NF2Week #NF2 #NF2Awareness
Ahead of Oscar’s 2nd treatment, Jo attended a meeting at his school with our Specialist #NF Nurse to provide the school with information on why Oscar is taking this drug & how it may affect him.
Blog 3: https://t.co/gWDRT8mpFz
#NF2Week #NTUKiNForm #NFSupport #NF2
Blog 2 is all about Oscar’s first Avastin treatment session. Jo gives a step by step account of a day that will live long in the family’s memories, and then turns her thoughts to the next session: https://t.co/2Cj5aEEz0V
#AvastinDiaries #NF2Aware #NF2Week #NF2 @nf2biosolution1
Jo’s blog today highlights invaluable advice from #NF2 support groups & those on the same treatment journey. @NerveTumoursUK runs a private Community group on Facebook, a safe space for #NFWarriors to share experiences & support each other: https://t.co/Wf4qAgy5JG
#NF2Week
Welcome to Jo’s #AvastinDiaries. Jo’s son Oscar has bilateral Vestibular Schwannoma & other #NF2 related issues. Blog 1 details the process for Oscar to be recommended for Avastin; how treatment will be carried out & the impact on his school life: https://t.co/t3cixFeDZI
#NF2Week
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