PCD Support UK

It’s #PCDAwarenessMonth and we want you to join us in shining a light on Primary Ciliary Dyskinesia. This month, we’ll be sharing information, asking questions and highlighting patient stories about what it’s like to live with PCD. But we need your help! Join in using #PCDAwarenessMonth and help us raise awareness throughout October. #Charity #primaryciliarydyskinesia #RareDisease #Rare

Through a new study, Medics 4 Rare Diseases have identified seven red flags, or clinical clues, that point to a patient having an underlying rare condition! So how did they gather the information? Back in 2018 M4RD worked with rare disease patients, carers, clinicians and advocates to co-create a survey to investigate the commonalities of rare disease. Patient advocacy groups were then invited to complete the survey and the results have been used to deduce a list of ‘red flags’ that can be used to help identify patients with underlying rare conditions. The red flags are: Multi body-system involvement Genetic inheritance patterns Continued presentation through child and adulthood Difficulties at school (e.g. relating to physical education and absences) Multiple specialist referrals Delayed diagnosis Misdiagnosis You can read the full report now https://lnkd.in/epv4tF8U

We're bringing back PCD Live with an 'Introduction to clinical trials' with ReCode Therapeutics Join us on Monday 17th June where John Matthew, Chief Medical Officer for ReCode Therapeutics shares an introduction to what to expect from taking part in a PCD specific clinic trial. Learn what a clinical trial is all about, why do we need, how do they work and importantly how you can get involved! Sign up today! https://lnkd.in/eHnP8Gu7

🚴♀️ Yesterday I completed the RideLondon-Essex 2024 for PCD Support UK! It was a tough 183km/114 miles in total, with heavy rain showers and strong winds. 🌧️💨 Each pedal stroke was worth it to support a fantastic charity dedicated to helping those with Primary Ciliary Dyskinesia (PCD) and funding crucial research. A huge thank you to everyone who’s donated! 🙏 It’s not too late to contribute! Please help me reach my fundraising goal if you can: https://lnkd.in/ebdbg7R9 Learn more about PCD Support UK at https://pcdsupport.org.uk/

Amazing news for #PCD 👏

🤝We need your help to support the work we do. We are entirely reliant on your generosity to continue supporting those affected by PCD. The money that you fundraise for PCD goes a long way in supporting those affected by PCD and their families. - £70 will pay for an Aerobika (physio device) - £150-£200 will pay for exercise equipment i.e. trampoline - £500 will sponsor a researcher to attend a conference - £1000-£2000 will pay for an important medical article to be made free to the public - £6000+ will pay for a free fun day out for our patients and their loved ones Want to help? If you have an idea for a fundraiser, we recommend setting up a JustGiving Page for PCD Support UK (let us know if you need help doing this!) If you would like to raise funds for us then please contact us with a list of what items you need, the delivery address, details of what you are planning, the date and location. Please also feel free to spread the word about your fundraising activities too – we are happy to share your event on our social media pages, on our website, and in our newsletter. www.PCDSupport.org.uk #PCDAwareness #PCDSupportUK #PCD #JustGiving #Fundraising

Eid Mubarak to all our friends and family in the PCD community, from all of us here at PCD Support UK. Eid ul Fitr takes place at the end of Ramadhan and translates to "the festival of the breaking of the fast". #Eid #eidmubarak #PCDSupport #PCD

In general, there isn’t much scientific evidence about fasting with an illness like PCD, that’s why its important to trust your own judgement and speak to a medical professional if you need further guidance or if you get symptoms while fasting. The British Islamic Medical Association advise that if you become unwell during then you should stop fasting and speak to a healthcare professional. Asthma + Lung UK have put together some important information about fasting in relation to lung conditions which you can read here: https://lnkd.in/eHTdihBr The following are exempt from fasting and PCD may fall into one (this is on a case by case basis) - Children - Elderly - Ill/ have a health condition which will become worse if they fast - Travelling - pregnant, breastfeeding or menstruating/post-natal bleeding. The most important thing is to make a decision that is safe and right for you. You don’t have to do this alone. You can speak to your local Imam and your healthcare professional for advice and support. The most important thing is to make a decision that is safe and right for you!

It's #RareDiseaseDay and we're celebrating all things rare here at PCD Support UK! Did you know that a rare disease is defined as a condition which affects less than 1 in 2,000 people? Primary Ciliary Dyskinesia (PCD) is a rare genetic disease affecting 1 in 7,500 people in the UK. (making it rare!) PCD is 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. If you're new to #PCD and want more information then check out our website which has loads of facts, information and videos detailing the condition. https://pcdsupport.org.uk/

🗣Participants needed for PCD Patient Transitioning Study with Cardiff University. This project aims to explore transition from paediatric to adult healthcare NHS services for individuals living with PCD. Online interviews will be conducted with individuals who have transitioned through NHS services. 🤝Interviews will also be conducted with those who have supported an individual through transition. ➡To take part please email: Kristina Hay (MSc Genetic and Genomic Counselling at Cardiff University) on [email protected] for more details and to take part.