ILD patient support

The Leicestershire Pulmonary Fibrosis Support Group. We meet. We discuss. We support. Chair: Mick Coe

[Carla Astles @CarlaAstles]

#pcrsuk2018 oh my!
20% of asthma pts adherent to prescribed regime
6% of COPD pts adherent to regime
Result from inhaled therapy monitored by a chip/adherence app
These people knew they were being watched
Chaotic non-adherers remain so over time
😱

[ILD-IN @ild_inn]

Patients with preserved lung volume benefit from treatment with nintedanib. https://t.co/Gg2kj3ASTQ

[Gisli Jenkins @IPFdoc]

1) AfroAmericans (AA) 4x < IPF & 4X > CTD-ILD than White Americans - reflects UK experience.
2) Survival from Dx longer in AA, but age of death is <<< younger!! Suspect reflects poor prognosis CTD-ILD this group have. Social or genetic issue?
@davidlederer @kaminskimed @DKNYpitt

[Action for Pulmonary Fibrosis @ActionPFcharity]

APF Chair, Steve Jones was delighted to visit the active Leicestershire support group this week. The group, led by Alan Tratt (far left) is going from strength to strength.

[Action for Pulmonary Fibrosis @ActionPFcharity]

APF Is delighted to announce that Chair, Steve Jones, has been elected
to the Executive-Board of the European Idiopathic Pulmonary Fibrosis &
Related Disorders Federation (EU-IPFF). #EU-@EU_IPFF

[ILD patient support @Leic_ILDSupport]

Have worked and #admired many https://t.co/EkP06YK3Ic

[Colette Marshall @colsmarshall]

An old lists of consultants from the LRI @Leic_hospital @AandHUHL . We now have over 800!

[ILD-IN @ild_inn]

Reviewing prognostic factors of IPF and follow up disease monitoring. https://t.co/ZVyEFM7KOd

[ILD patient support @Leic_ILDSupport]

⁦@gburgeILDNN⁩ #IPF assessing breathlessness

[Daniel Kass @DKNYPitt]

Thanks @KaminskiMed ! You’re right about Kevin Gibson! This #IPF trials and all the others discussed at #ATS2018 give me a lot of confidence that we will #CureIPF https://t.co/AyqsZ4dQDd

[Action for Pulmonary Fibrosis @ActionPFcharity]

@justso20 Thanks Sandra I’ll change it! Yes that is too early!!

[Bethany Bateman @BatemanBethany]

Interesting to hear that most inhaler errors are down to breathing...

[Ernesto Juárez @LungIsLong]

African-American Race and Mortality in Interstitial Lung Disease: younger age at dx, decreased all-cause mortality, greater odds of having CTD-ILD / IPAF #RespEd
https://t.co/lXagniF3LN

[Leicester's Hospitals @Leic_hospital]

Sounding good! https://t.co/WXiRSKTJH7

[ILD patient support @Leic_ILDSupport]

It's our #patient support group today. All welcome.
@Leic_hospital @ActionPFcharity

[Action for Pulmonary Fibrosis @ActionPFcharity]

APF Chair Karen Hughes is attending @EU_IPFF this week to work on a global #IPF awareness approach alongside other patient groups #charity

[British Lung Foundation @lunguk]

Gentle exercise is good for the lungs. Get involved in National Walking Month #Try20Tips https://t.co/rq6BDZTnMP https://t.co/a7hP0NCpGU