Rare Disease Day 2019!

Today is Rare Disease Day, which takes place on the last day of February each year. The main objective of Rare Disease Day is to to raise awareness for all rare diseases and the impact they have on patients' lives. Building awareness is so important, because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed.

 
Rare Disease 1
 

This annual campaign primarily targets the general public, but it also strives to raise awareness amongst public authorities, researchers and health professionals. Research is vital, as most rare conditions don’t get the same level of publicity as many well known conditions. So even though funds for research into rare diseases have increased over the years, we still have a long way to go! As someone who lives with multiple rare conditions, I rely on medications and treatments to stabilise some of my symptoms. All of which, would not be possible without research, so it really is so important.

 
Rare Disease 2
 
Rare Disease 4
 

Having a rare condition isn't easy though, as it causes me to have more bad days than good! Making me feel extremely frustrated at times, because I never get a day off. Every day is a battle, which can be mentally draining at times for both myself and my family. No matter how effectively you manage your symptoms, your diagnosis can still have enormous repercussions for the whole family. Living with a rare disease becomes a daily learning experience for both the patient and their families, regardless of the diagnosis. So even though we may experience different symptoms, we all have to fight the battles listed below:

  • How to find a diagnosis?

  • How to access treatments?

  • How to find appropriate expertise?

  • How to acquire specialist equipment?

  • How to administer treatments?

  • How to manage the economic burden of living with a rare disease?

  • How to ensure the well-being of the entire family and balance priorities? 

  • How to work with a team of caregivers, healthcare professionals, pharmacists etc and coordinate care between them?

So many of us have to take things into our own hands, spending our free time researching our conditions, potential treatments, the best consultants etc. All of which, is often a never ending task that can feel extremely daunting at times. Although, there are surprisingly some positives to having a rare condition! One prime example being that you become part of a family, who understand the reality of living with a rare condition. We might not have the same diagnosis or symptoms, but we share some of the same emotions and feelings that come along with an experience like this. Having a rare disease is an ever changing journey, but knowing you are not alone is a very comforting thought.

Rare Disease 3

This year’s theme is ‘Bridging Health and Social Care’ and Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.

The slogan for this year is 'Show Your Rare, Show You Care.' So even when this special day comes to an end, you can still get involved in the #ShowYourRare campaign by sharing your face-paint selfie or group photo on social media using the hashtags #RareDiseaseDay and #ShowYourRare.

Head over to the Rare Disease Day website to learn more about the long list of rare conditions that exist and how you can get involved today!