Australians have become accustomed to stories about the latest breakthroughs in the treatment of cancers and chronic conditions frequently securing a spot in headline news across the country, however rare diseases can often struggle to capture public interest and attention in the same way.
While millions of Australians are affected by chronic conditions like diabetes (Around 1.3 million Australians), a wide variety of patients are impacted by specific rare diseases such as acromegaly (less than 1,000 Australians), Huntington’s disease (around 2,000 Australians) and Phenylketonuria, known as PKU, (around 1,600 Australians).
Overall, there are more than 7,000 conditions classified as rare diseases, with almost 2 million Australians living with some form of rare disease. This makes up approximately 8% of the population, the equivalent of the Cities of Adelaide and Canberra combined.
Behind every rare disease, there are impacted individuals and families, and awareness is often the key to accurate and timely diagnosis for affected patients.
So, how do we make the public, media, and decision makers care about a health issue, even if it’s rare?
The key is patient stories. Patient stories are a gateway to understanding the unknown.
Patient stories are powerful, and effectively communicating personal experience with a rare disease humanises health conditions. Patient experiences are more than just anecdotes, and communicating these stories can drive change and advocacy for those affected.
While rare diseases do affect fewer people than common conditions, each rare disease affects real lives, real patient struggles, and with increased awareness, there is hope for both existing and future patients.
Health statistics, data and medical terms, without a patient or human element, can struggle to leave a lasting impression on someone absorbing this information. Patient stories make the health issue relatable and can emotionally resonate with Australians.
The pathway to diagnosis for a person living with a rare disease is more often than not, very long. This is largely due to the fact that there are less comparable cases in existence, so symptoms can be attributed to other conditions or diseases incorrectly.
An example of this from a rare disease campaign our team at London Agency worked on is Shari Dawson, a patient who unknowingly struggled for just short of a decade with acromegaly, a rare growth disorder, until she was eventually rushed in for emergency brain surgery and only then received a diagnosis and treatment after many years.
Education on rare diseases, both among relevant medical professionals and the general public, can effectively make people care, and is so important to ensure patients like Shari avoid going through a similar experience. Bridging the gap of knowledge through awareness campaigns is the key to this.
Effective ways to communicate rare disease patient stories include through earned media campaigns, events such as webinars or in-person seminars, and via social media.
Rare diseases can often be complex in nature, and patient stories are the key to breaking down this barrier to both public understanding, and caring.
Awareness is the first step towards improving support systems for patients, advocacy, securing clinical trials and research funding.
For someone to care about conditions such as acromegaly, they need to understand what it means to a patient. Storytelling, education and overall awareness of the disease are vital foundations to build this advocacy.
