Story
This May, the ladies at OBX will be raising money for a charity close to our heart; PCD Support UK. PCD Support UK is the UK’s dedicated charity that supports those with Primary Ciliary Dyskinesia (PCD). This rare disorder affects the hair-like structures (called cilia) in the lungs and sinuses, resulting in frequent lung infections. Left untreated, it can cause permanent lung damage.
Why are OBX ladies raising money for PCD Support UK?
One of our very own OBX members Katie has PCD, and you may have spotted her training in the gym, or featured on our socials. Katie is also a proud advocate for the charity and has been involved with them for a number of years.
Katie shares
The charity is a lifeline for those affected by PCD. When I was diagnosed we had little to no information about the condition. My mum was scared, confused and worried, and the charity has been a vital support to both of us. My mum and I spoke with then chair Fiona who spent time giving us information, reassuring us and setting up events for us to meet others who were in the same boat. As Chair of the charity, I now do the same for those new to the PCD World, and it’s so rewarding to be able to do for others what Fiona did for us.
Katie continues:
Exercise is such an important part of keeping well with PCD, and I personally found boxing is an incredible way to keep fit and active, without it feeling like a chore! I’m thrilled that OBX are supporting the charity, and if anyone is on the search for a friendly and a supportive community, then consider training with OBX!
About PCD Support UK
The charity offers direct support to patients and their loved ones, whether it’s a telephone call, an online zoom or in-person at events throughout the year. There are small grants to help patients get to their appointments and purchase exercise equipment to help patients as healthy as possible.
Without an early diagnosis and specialist care, patients can develop irreversible lung damage in early childhood. Many patients spend weeks on end in hospitals, and hours doing specialist treatment.
What does your fundraising do?
Your funds help PCD Support UK directly support patients, lobby for better care, support research into new treatments, and support patients with getting early diagnostic testing.
Who are PCD Support UK?
We are PCD Support UK. We’re here for those affected by PCD, we talk about PCD as widely as possible and we champion research to improve its diagnosis, management and treatment.
Primary Ciliary Dyskinesia (PCD) is a rare, genetic disease affecting around 1 in 7,500 people in the UK. It's caused by abnormal motile cilia (motile cilia are the microscopic hairs that beat in the airways, sweeping secretions out of the respiratory tract). PCD can affect the lungs, nose, sinuses, ears and fertility and causes recurrent respiratory infections.