Last year, to mark the launch of the NHS Familial Pneumothorax Rare Disease Collaborative Network we celebrated the first ever world pneumothorax day and this year we are going bigger.
A pneumothorax occurs when the air leaks from the lung causing it to collapse. Sometimes this happens spontaneously, and no cause is ever found. However, several rare inherited conditions can cause pneumothorax including Birt-Hogg-Dubé Syndrome (BHD).
Many of these rare diseases come with other complications so early diagnosis is essential to get the best care possible. It takes on average 7 years to be diagnosed with a rare condition and we want to change this.
On the 30th of June, we are raising awareness of the causes of pneumothorax. We want all doctors to investigate the cause of pneumothorax, especially if there have been multiple cases within the same family.
We would love for you to join us and help spread the word. Our social media toolkit includes Twitter/Facebook posts for you to share. Please include the hashtags #PneumothoraxDay and #WPD22 in your social media posts and join the conversation.
We will also be sharing interviews with patients and doctors throughout the day. We look forward to seeing you there!
Social Media Toolkit
Customisable Facebook/Twitter Post: Edit the slide and then save it as a JPEG file to share on your social media.
Example Social Media Posts
To make it easier to use the images we’ve made on World Pneumothorax Day, we’ve also created some example posts to go alongside the images!
- Each year 20 people in every 100,000 will have a lung collapse. 2 of these will have an underlying genetic condition. Today, we are raising awareness of the inherited causes of pneumothorax. #WPD2022 #PneumothoraxDay
- A collapsed lung is a common early presentation in many genetic conditions associated with familial pneumothorax. If there is a family history of collapsed lungs, genetic testing should be performed. #WPD2022 #PneumothoraxDay
- Early and accurate diagnosis of the cause of familial pneumothorax is important. Many associated genetic conditions have more serious complications that can be managed and treated early if the right screening is in place. #WPD2022 #PneumothoraxDay
- Where a genetic diagnosis can be made, #BHDSyndrome is the most common cause of familial pneumothorax. #WPD2022 #PneumothoraxDay #ThinkBHD
- Asking whether someone has a family history of pneumothorax can save lives. #WPD2022 #PneumothoraxDay
Feel free to use them as they are, adapt them to your needs or create your own! Please remember to use the hashtags #WPD2022 and #PneumothoraxDay.
Information and resources
What are the symptoms of pneumothorax?