Derby PF Support Group

29/02/2020

At our meeting on Thursday 5th March 2020 -
Clinical Trials Update with Lucy Howard and Dr. Sani
from the Nottingham Hospitals NHS Trust -
come along and join us

05/09/2018

September doesn't just host the start of autumn, it is also the home of the British Lung Foundation's IPF Week. From the 15th - 23rd September 2018, it is a week of publicising IPF and PF to raise awareness and knowledge. Please look at the British Lung Foundations website at https://www.blf.org.uk/support-for-you/ipf/ipf-week for more information. Thank you to Jayne Wheeldon-Mee for reminding us.

02/09/2018

Don't forget our September meeting will be a picnic at Carsington Reservoir! We will be meeting at the Picnic area near the visitor's centre (circled in yellow) at 12.30pm on Thursday 6th September 2018.
We welcome snacks and cakes if you feel like sharing, bring your own lunch or just come for a chat.
Everyone is welcome so please come along! Help us celebrate 3 years since our inaugural Carsington Reservoir Picnic, and nearly 4 years since we launched our support group.
We hope to see you on Thursday at 12.30pm.

13/08/2018

This post was recently on the Action for Pulmonary Fibrosis page. It is a study of genetics and IPF, and you may be able to take part! Also, check out Action for Pulmonary Fibrosis for updates about their work and events!

Today we'd like to put a spotlight on research. The 100,000 Genomes Project aims to better understand how genetics may affect both IPF disease progression and response to treatment. This is extremely valuable because it will prevent patients being exposed to potentially toxic treatments as well as minimising waste in the NHS by ensuring only patients likely to get benefit from treatment are exposed to the risk of treatment. https://www.genomicsengland.co.uk/

22/07/2018

Here’s a link with some information about living with IPF, which might be helpful!

http://ipftoday.com

IPF Today is an open source and patient focused information platform. We found that much PF information is: too negative/ not written in laymen language/ primarily for medical pros/ not updated for many months or years/ not focused on your questions, etc.

21/07/2018

Here’s a link from Action for Pulmonary Fibrosis, who are conducting a survey for IPF and PF sufferers and their carers. Feel free to follow their page and fill in the survey if you would like too!

17/07/2018

Here’s an interesting article posted on another PF group about the link between Low Vitamin D and Lung Scarring.

https://www.hopkinsmedicine.org/news/media/releases/low_vitamin_d_levels_associated_with_scarring_lung_disease

Reviewing medical information gathered on more than 6,000 adults over a 10-year period, Johns Hopkins researchers have found that lower than normal blood levels of vitamin D were linked to increased risk of early signs of interstitial lung disease (ILD).

11/07/2018

A petition has recently been put forward to Increase Funding and Testing for Pulmonary Fibrosis and Idiopathic Pulmonary Fibrosis. It has reached 7,700 and they need to reach 10,000 in order to have a response for the government. If you have 5 minutes to sign it before 18 November 2018, it would very appreciated the PF community.

https://petition.parliament.uk/petitions/220016

Idiopathic Pulmonary fibrosis is a condition in which the lung tissue becomes thickened, stiff & scarred over a period of time. The lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don’t get the oxygen they need.

11/07/2018

Action for Pulmonary Fibrosis are running a survey to assess IPF care across the UK. The link is below if you would like to contribute your opinion! According to the group the report in 2015 had significant impact, so it’s definitely worth a few minutes to fill their survey out.

https://www.actionpulmonaryfibrosis.org/2018/apf-launches-ipf-patient-survey/

Our Vision: A world in which everyone living with pulmonary fibrosis has a better future

10/07/2018

And back in 2017, thanks to generous donations and fundraising, we were able to donate an Airvo machine to Derby Royal Hospital's respiratory ward 404.
Margaret and Doreen visited the hospital and met the staff and we hope it will continue to help many people.

10/07/2018

Recently, a group of five members of the support group presented a multi-gym to the Pulmonary rehab department at London Road Community Hospital.
By fundraising and donations we were able to donate a piece of equipment which they identified as really important for low impact exercise.
Thank you to all who donated. We hope to run more fund raising events in the next year – watch this space!

10/07/2018

We are Derby's support group for sufferers and families of Pulmonary Fibrosis. We meet monthly at 1pm at the Mickleover Golf Club, but keep an eye on our website for more information or ring 07966 726411.

All are welcome for coffee and cake, along with talks and fundraisers.

10/07/2018

Hi Everyone.
Just an update that we are not meeting in August, however we will be back on the 6th September for our third Annual Carsington Picnic. We start at noon.
Come join us for a nice day out! Hopefully this nice weather will stay around until then.

04/05/2017

Today, Bromwyn is coming to talk about Singing for Breathing! Come and join us at Mickleover Golf Club at 2pm!

31/08/2016

Hi Everyone!
Hope to see you all at Carsington Reservoir, at 12pm tomorrow.
Should be a lovely picnic, with nice weather and good company.
Meet by the covered picnic area, on the right of the visitors centre.
See you soon!

01/08/2016

There will be no meeting during August - so everyone enjoy your lovely English Summer!
On September 1st we are having a picnic at Carsington Water, so bring a lunch and join us under the covered picnic area at 12. Park on the right of the Visitors Centre, so you are close to the picnic.
On October 6th, we are back at Mickleover Golf Club at 2pm, with Oxygen Sue.
See you all soon!

05/07/2016

Thursday's Meeting will be a talk on Anxiety, followed by a BBQ at 3.30. See you at Mickleover Golf Club at 2!

18/01/2016

Next meeting will be Thursday 4th Feb - Mickleover Golf Club at 2pm. Hope to see you all there