Early diagnosis of Birt-Hogg-Dubé syndrome (BHD) is vital so people can be monitored for kidney cancer. However, many doctors have never heard of the condition, so it often takes people years to be correctly diagnosed. At the BHD Foundation we work alongside the community to raise awareness of this rare and important condition.
Social media is an effective way to increase visibility of BHD, often reaching new and varied audiences. This year we have taken part in several awareness days and social media takeovers. In January we took over the Medics 4 Rare Disease (M4RD) Instagram page. M4RD is a charity which educates future doctors about rare diseases. 166 people viewed the BHD content. Only 1 in 8 of those who completed the poll following viewing had previously heard of BHD. This shows the potential to raise awareness among medical professionals.
This was followed by Rare Disease Day in February. On Rare Disease Day we published Lea’s BHD story ‘From Collapsed Lung to Ironman’ with digital health company Congenica. Her empowering story shows how important it is for rare conditions to be recognised and why on Rare Disease Day we need to come together and raise awareness.
Our most successful awareness day so far was World Pneumothorax Day on June 30th. This is a day that we spearheaded in 2021 to mark the launch of the NHS Familial Pneumothorax Rare Disease Collaborative Network. World Pneumothorax Day is now a worldwide event. This year several major charities got involved on social media including the European Lung Foundation and Lung and Asthma UK. Additionally, a member of the community Joanna shared her BHD story ‘Married on a mountain with a collapsed lung’ with us, which was published in Rare Revolution Magazine. It was one of their top blogs with 375 reads on the week it was published. That is 375 more people who will have heard of BHD.
Leaflets and Conferences
We develop educational resources about BHD for doctors. This year we created a BHD awareness leaflet (a printable version is also available). This leaflet is designed for doctors who have never heard of BHD. It gives an overview of the symptoms and recommendations on what to do if BHD is suspected. This leaflet was shared on a virtual platform at the European Respiratory Society Congress and WONCA, the general practitioner conference. We hope to take it to many more events in the future including in-person conferences. Our focus will be lung, kidney and skin conferences. However, we will also target other doctors who may see the symptoms of BHD. This includes radiologists, emergency medicine doctors and general practitioners.
We also have patient leaflets. They provide information on the symptoms of BHD and how to treat them. Although they are aimed at patients, they can also be a useful introduction to BHD for doctors. You are welcome to print them out and take them to your doctor appointments.
Earlier this year we were interviewed for a Rare Disease Podcast called ‘Wait How to Do You Spell that?’ with Patient Worthy. In the podcast we discussed BIRT, the new BHD patient registry, and the work of the BHD Foundation.
Talking about BHD on different platforms allows us to reach a wider audience and further educate people about BHD.
How can you get involved in raising awareness?
We publish personal stories about BHD on our website. It can be a really impactful way to raise awareness. We’ve also had feedback from the community about the importance of hearing from others about their lived experiences of BHD.
If you would like to share your BHD story please email us or message us on FB. This can be in the form of a written or video interview or a short film.
You can also raise awareness by:
- Directing your doctors to our webpage or giving them one of our leaflets.
- Taking part in awareness days.
- Sharing our social media posts.
- Fundraising for BHD. Visit our ‘Get Involved’ page to find out more about our new fundraising campaign.
Thank you to everyone who has helped us to raise awareness of BHD. By raising awareness more people will be diagnosed, more funding will be available for research and we will move closer to new therapies and eventually a cure. Let’s work towards a future with increased awareness of BHD together.
If you have any ideas on how to raise awareness we’d love to hear from you. Email us at firstname.lastname@example.org.