PCD Live! Fertility

PCD Live! Fertility

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PCD Live! Fertility

Ever wondered how PCD may affect fertility? Both male and female infertility will be discussed at our next PCD Live! Join us on Thursday 29th July at 5:30 pm. Johanna and Anu will speak about fertility issues that may arise in those with PCD, as well as the management of infertility in PCD. Sign up on Eventbrite now!

PCD Live!: Breathing Pattern Disorders

PCD Live!: Breathing Pattern Disorders

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PCD Live!: Breathing Pattern Disorders

What’s the talk about?

3 PCD specialist physiotherapists led a session on breathing pattern disorders and physiotherapy in PCD.

Meet the team!
Hannah, Liz and Lynne work together with the other PCD physiotherapists as part of the National PCD Management Service.

Hannah
Hannah Wilkins is a respiratory physiotherapist who has been working for the University hospital Southampton paediatric PCD service for the past 4 years. She worked with adults with cystic fibrosis for many years in both Bristol and then London. When she moved with her young family to Hampshire five years ago an exciting opportunity opened up for her to join the paediatric PCD team there. She has loved working with the children and young people in her centre and helping develop the PCD service there. The development of the adult PCD service is a very exciting time for PCD with the opportunities it gives in helping us understand the condition more and working together to ensure that we are providing a service that focuses on all aspects of having PCD.

Liz
Liz Shepherd has been a respiratory physiotherapist at Southampton General Hospital since 2012. During her time in Southampton she has worked with people with many different lung diseases including cystic fibrosis, bronchiectasis and COPD. Liz has also spent time working as a researcher and until recently was involved in a large trial in Southampton which helped to improve medication adherence in people with cystic fibrosis. Liz has been with the Southampton adult PCD team since it started in September last year. She has really enjoyed the opportunity to work with such a diverse group of patients in the adult PCD service and to use her knowledge of respiratory conditions to improve their health and wellbeing.

Lynne
Lynne Schofield is a respiratory physiotherapist who has been working in the North of England Paediatric PCD Service for 8 years. Lynne had worked with young people with PCD in her previous role as a physiotherapist in Bradford, this is the area with the highest rate of people with PCD. She’s super enthusiastic about all things to do with sputum clearance and really enjoys supporting young people with PCD to stay well through using regular airway clearance and exercise.

Please don’t hesitate to get in touch with us if you have any questions: [email protected]

Events from the Brompton & Harefield Hospitals

Events from the Brompton & Harefield Hospitals

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Events from the Brompton & Harefield Hospitals

We are delighted to share details of upcoming events open to members and patients of the Royal Brompton & Harefield Hospitals. Please remember to register in advance so that they can send you the link to join the webinar. Got questions? Please contact Nancy at [email protected]

Learn about the employment support available for people with long-term health conditions / disabilities

Hosted by Brompton Fountain

When?

Wednesday 26th May
5.00pm – 6:00pm
Online

Please note: this event is only open to patients of Royal Brompton and Harefield hospitals.

Webinar

Are you worried about finding employment or curious what support is available? Are you unsure whether to disclose your health condition to a potential employer? Do you want to find out about Disability Confident employers? Rabia Lemahieu, from Disability Rights UK, will be presenting and answering your questions about employment and access to work. This webinar is suitable for all ages, particularly teenagers and young adults entering employment. Parents are also welcome to attend.

The role of genetic testing in diagnosing health conditions

Online, Thursday 3rd June, 10:30 – 11:30am

This is a unique opportunity to join Dr Deborah Morris-Rosendahl, consultant clinical scientist and head of the Clinical Genetics and Genomics Laboratory, as she talks about the significant role genetic testing plays in diagnosing suspected inherited cardiac and respiratory conditions. As she and her team celebrate the milestone achievement of analysing 10,000 samples of DNA, Dr Morris-Rosendahl will also share how genetic testing has enabled clinical teams across Royal Brompton and Harefield to diagnose conditions such as cystic fibrosis and inherited arrthymias at an early stage, when treatment can be more effective.

Graft, grace and gratitude: encounters with the Royal Brompton Hospital archive

Online, Thursday, 10th June, 6:00 -7:00pm

Giskin Day

A Principal Teaching Fellow at Imperial College London where she leads on medical humanities, will talk about her experiences working with material from the historic archives of the Royal Brompton Hospital, and the findings of her research so far.

Questions

If you have any questions about these events or your membership, please contact Nancy at [email protected].

Events from the Brompton & Harefield Hospitals

PCD Live!: Dr Gabrielle Wheway and PCD and non-CF bronchiectasis in the 100,000 Genomes Project

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PCD Live!: Dr Gabrielle Wheway and PCD and non-CF bronchiectasis in the 100,000 Genomes Project

Live recording of PCD Live! With Dr Gabrielle Wheway

‘PCD and non-CF bronchiectasis in the 100,000 Genomes Project; What’s going on in the research domain?’ – Hosted by Lucy Dixon from the PCD Family Support Group UK on Thursday 4th February 2021.

What’s the talk about?

Dr Gabrielle Wheway is a lecturer in Functional Genomics within the Faculty of Medicine at the University of Southampton. She specialises in understanding why specific changes in specific genes lead to diseases associated with cilia (ciliopathies). Her background is in the study of ciliopathies associated with defects in primary cilia (especially those ciliopathies affecting the eye and brain) and she has worked on the respiratory ciliopathies including PCD since joining the University of Southampton in 2018. In Southampton she works Prof Jane Lucas, who runs the PCD Diagnostic Service in Southampton, and other colleagues.

This talk will give a background to the 100,000 Genomes Project and Dr Wheway will help us understand more about the genetics of PCD.

Next up on PCD Live

PCD Live: It’s Physio time! On 31st March, we have three PCD specialist physiotherapists leading a session on breathing pattern disorders and PCD physio techniques. There will be break out rooms that will be targeted at young children, teens and adults.

Events from the Brompton & Harefield Hospitals

PCD Live: Psychosocial aspects of PCD

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PCD Live: Psychosocial aspects of PCD

Live recording of PCD Live: Psychosocial aspects of PCD. Presented by Marieke Verkleij and hosted by Lucy Dixon from the PCD Family Support Group UK on Thursday 26th November.

Marieke is from the department of medical psychology at Amsterdam University Medical Centers (the Netherlands), and coordinator of the European (ECFS) Mental Health Working Group.

What’s the talk about?

Individuals with a chronic lung disease are at risk for developing symptoms of anxiety and depression. Marieke will show the results of her study conducted in Amsterdam UMC where she investigated anxiety and depression in children with PCD, as well as their caregivers and adults with PCD.

Events from the Brompton & Harefield Hospitals

PCD Live: Katie Horton and Haemophilus Influenzae

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PCD Live: Katie Horton and Haemophilus Influenzae

Live recording of PCD Live: Katie Horton and Haemophilus Influenzae. Presented by Katie Horton from the University of Southampon and hosted by Katie Dexter from the PCD Family Support Group UK on Thursday 29th October.

What’s the talk about?

Katie Horton is a PhD researcher at Southampton University. She investigates PCD and Haemophilus influenzae bacterial infection. In her talk she will explain how she uses nose cells and bacteria from PCD patients to help understand why PCD airways are more susceptible to infection.