This World Pneumothorax Day (WPD), we are calling for doctors to ask about a family history if someone presents with a spontaneous pneumothorax.
June 30th marks World Pneumothorax Day – a day in which we raise awareness of the rare causes of collapsed lungs. This campaign was launched in 2021 with the Myrovlytis Trust to mark the opening of the NHS Familial Pneumothorax Rare Disease Collaborative Network.
What is pneumothorax?
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.
10% of all spontaneous pneumothorax cases are familial. This is why we are urging doctors to ask about family history if a patient presents with a spontaneous pneumothorax.
What are the causes of familial pneumothorax?
Several rare diseases can be causes, this includes:
- BHD
- Lymphangioleiomyomatosis (LAM)
- Marfan Syndrome
- Vascular Ehlers-Danlos Syndrome (VEDS)
- Homocystinuria
- Cutis laxa
Please note that this is not an exhaustive list of causes.
What are the symptoms of pneumothorax?
Symptoms can vary but symptoms can include:
- A short stabbing pain on one side of the chest or shoulder
- Shortness of breath
- Chest tightness
- Bubbling sensation on one side of the chest
- A cough
Why are we spreading awareness around pneumothorax?
If a person presents with a pneumothorax, this could be a sign that they have an underlying, undiagnosed condition. There are several inherited causes of pneumothorax and if multiple family members have had pneumothorax it suggests it could have a genetic cause.. Through early diagnosis of associated genetic conditions, the management and treatment of such conditions can be put in place. By investigating the cause of pneumothorax, clinicians can help save lives.
How can I get involved?
Everyone can help make a difference on WPD. You can spread the word on social media by downloading our free social media toolkit. The toolkit holds an array of graphics which you can post on your social media channels to raise awareness.
Please get involved with our campaign and help raise awareness of the causes of familial pneumothorax. Don’t forget to include the hashtags #PneumothoraxDay and #WPD23 – this allows us to find and share your posts!
Download the free social media toolkit:
Example social media posts:
In a hurry or in need of some inspiration? We have you covered. Take a look below for some example social media posts, simply copy and paste before posting!
- It’s World Pneumothorax Day and this year, we are calling for doctors to ask about a family history if someone presents with a spontaneous pneumothorax. Help spread awareness to help save lives. #PneumothoraxDay #WPD23
- This #PneumothoraxDay, I am raising awareness of the rare causes of collapsed lungs. Take a look below to learn more about the causes of familial pneumothorax. #WPD23 [Insert graphic on causes of familial pneumothorax]
- Did you know that 10% of all spontaneous pneumothorax cases are familial? This #PneumothoraxDay, help us urge doctors to ask about family history when a patient presents with a spontaneous pneumothorax. #WPD23
- Collapsed lungs can be a sign of a rare condition. Learn more about pneumothorax today to help us save lives. Head over to the BHD Foundation to find out more: https://bhdsyndrome.org/features-and-events/world-pneumothorax-day-2023/#PneumothoraxDay
Patient stories:
- Lenke’s BHD Story: Pregnancy
- Married on a Mountain with a Collapsed Lung
- Click here to read more stories!
Information and resources:
- More on pneumothorax
- Should People Who Have a Collapsed Lung be Tested for BHD?
- What is the difference between BHD and LAM?
What are the symptoms of pneumothorax?
What are the causes of familial pneumothorax?