3 May 2023
People with cystic fibrosis still need the support of Kiwis
May is Cystic Fibrosis Awareness Month. Cystic Fibrosis NZ (CFNZ) is running their CRUEL NEEDS KIND campaign throughout the month, needing to raise critical funds for Kiwi families living with the daily impact of New Zealand’s most common life-threatening, inherited condition.
Lisa Burns, Chief Executive of CFNZ says, “While getting funded access to Trikafta is a significant achievement in the treatment of CF in New Zealand, it doesn’t change the reality that people still have CF, it’s a lifelong condition that puts a lot of pressure on individuals and families. Our Social Workers are reporting an increase in contacts and requests for support, particularly around mental health. The support we provide is vital for quality of life, and we need to make sure we can be there when our community need us.”
It takes courage to live with and survive with CF, it can be isolating, painful, and frightening, leading to anxiety, depression, and poor quality of life, as they face the potential for declining health, increased complications, major medical interventions, and premature death.
In a recent survey of individuals and families living with CF, 68% reported that they need support for their mental health and wellbeing, 55% rely on the support of their CFNZ Social Worker and only 25% have access to psychological support through regular outpatient clinics.
Jessica Paterson, whose daughter Grace had a liver and pancreas transplant last year, and recently started Trikafta says, “CF causes so much destruction and devastation for people affected by it, it is never ending, physically consuming, and soul destroying. While Trikafta is a massive step forward for our CF community, we must wrap our support around families as they continue their tumultuous journey.”
The experience of living with CF is complex and overwhelming with many struggling with the day-to-day impacts, including lung clearance, medication, nutrition, exercise, x-rays, tests, IV lines, and staying safe from infections including COVID-19.
CF is more than a lung condition, it causes liver disease, issues with digestion, sinus disease, CF related diabetes, infertility and weakened bone density.
Lisa says “Relief comes in many forms, and it’s a part of what we do every day for our community. For five decades CFNZ has made a tangible difference to the lives of Kiwi families living with CF, and we’ll continue to be here and walk beside them for life.”
Funds raised provide vital support that includes:
Since 1 July 2018, CFNZ has given over $1.3m to people with CF to improve quality of life physically and emotionally, overcome financial obstacles and ensure physical activity was kept up through exercise. This has only been possible through the kindness of generous Kiwis who understand, care, and want to help.
It costs CFNZ an average of $850 to $1,000 per year to support a person or family with CF. With less than 4 percent received from Government sources, it leaves a significant short fall for the national services provided by CFNZ.
This May during the CF Appeal, they are asking Kiwis to BE THE RELIEF, and give hope to families who are still navigating the reality of living with a life-threatening chronic condition.
“These are impressive and exciting times as the world of precision medicines, like Trikafta, makes a significant difference to the lives of people with CF. However, people are born with CF, and they will have it for the whole of their life, it doesn’t change the reality that we do not yet have a cure.
Support during CF Awareness Month can come in many forms by making a donation, fundraising, buying a box of Chocky Fish, or shop-to-donate with a piece of limited-edition 2023 Cruel Needs Kind merch.” says Lisa.
Please make a Deliberate Act of Kindness this May and support Kiwis living with cystic fibrosis.
Deliberate Acts of Kindness Day is Friday the 26th of May 2023.
Visit www.cruelneedskind.org.nz to find out more