PWCF Spotlight
PWCF Spotlight
30
Nov
2018

PWCF Spotlight

The PWCF Spotlight series, which appears in each issue our newsletter Spectrum, aims to highlight the accomplishments and achievements of our members. It also provides a platform for people with CF and their families to tell their story.
 

Education

Caoimhín O'Lúing, Parent, Siobhan Murray, PWCF, Laura Carrick, PWCF, Sarah Pender, PWCF

HOS

The recent Independent Living Report produced by Cystic Fibrosis Ireland highlighted that education is still an area where people with cystic fibrosis (PWCF) face enormous challenges due to their chronic illness. The report showed that there has been a significant increase in PWCF obtaining third level qualifications. However, cystic fibrosis continues to cause significant periods of absenteeism from school or college which causes an associated impact on the ability to perform.

In this Spotlight we hear from four members of the CF Community at different stages of education who tell us the impact CF has on their education and how they manage study and treatment.

Click here to read.


Travel

Declan Houlihan, PWCF and Claire Merrigan, Mother of a child with CF

Getting the chance to travel and visit new places is an opportunity that should not be passed up. It is important to take the time to get away from daily routines, whether it be a weekend get-away or an extended trip. A person with cystic fibrosis (CF)can travel, but they will have to take the extra precautions when planning their journey. It is important to talk to your CF team well in advance of booking a trip who can give you advice on whether you are healthy enough to travel and advise you about the practicalities of going on holiday and provide you with any health-related documentation which you may require.It is wise to choose a destination that has a relatively good health care system, ideally with comprehensive CF care delivered via specialised centres. A full list of all of the available CF care centres worldwide can be found at the Cystic Fibrosis Worldwide website; https://www.cfww.org/
 
Spotlight also spoke to a person with CF and a parent to get their experiences and tips on travel. Click here to read.

Online Support

As every person with CF knows cross infection is a huge risk and can inhibit personal interaction with fellow members of the CF Community. Peer support is as important to self management of a condition as any other aspect of care.To this length a group of CF’ers came together to start a an online group for people with CF to act as an outlet, a support and a meeting point for the community. While we recognise the CF Community is made up of non-PWCFs (parents, siblings, partners, children) it wasimportant for patients to have a place where they could speak openly.

The CF Mammies Facebook page was born at a CF conference in Kilashee castle, Kildare in 2012 where four Mums met each other for the first time. We sat and spoke about all our experiences with our children (some more experienced than others in the CF journey) but brought great comfort to know wewere not alone. When it was time to leave on the Sunday afternoon we decided to set up a Facebook group with each other that we could continue to chat and offer advice & support when needed.

Click here to read about what online support is available.

Surviving the Storm

Sadie Kerrigan, CF Mammy

The biggest snow fall since 1982, the Beast from the East!

Read one mother's experience of braving the storm with a child in hospital.

 

 

 

 

 

Allowing our children to become our teachers

Bernie Martin, CF Mammy

 

As parents, we automatically think of ourselves as our children's educators. But if we allow them to, our children can actually teach US so much.

Read one mother's journey of learning as she explains how having a child with CF can change your life completely.

 
 

Hold On To Your Kite

Aoife Rafter, PWCF

Sharing her experiences of battling CF Aoife talks about education, travel, employment and other aspects of her life and the path that took her to climbing Croagh Patrick!

Click here to read Aoife's inspirational story of #BeatingCF

 

 
 
 
 
 
 
 
 
 

 

Knitters for Life

Sara Cross, PWCF

Sara has cystic fibrosis, but it is not the most important thing about her. She is a daughter, a wife, a sister and a mother. In her own words "These are the things that are a part of who I am because these are the things that have showed me the path I should follow."

Follow Sara as she shares her story and the role arts and craft play in her life. 

 

 

My Malin 2 Mizen Journey

Brian McCarroll, PWCF

In May 2017,  I took part in the Malin2Mizen CycleforCf. This was a cycle from the most northerly point of Ireland to the most southerly point. In total it was 630Km over a four day period.

Reflect on this mammoth cycle with Brian as he talks cystic fibrosis, cycling and confidence. 

 

 
 
 
 
 
 
 
 
 

Competitive Swimming

By Ella Burns, PWCF

Taught to swim at an early age, to be water safe to training at 4.30am Ella shares how she made the move from swimming lessons to the Irish Open Long Course Championships and how she manages swimming and studying. 

Click here to read Ella's story.