Raise Awareness for Rare Diseases!
As many people know, Leap Day comes every four years on February 29th. However, what many people might not know is that Leap Day is also recognized as Rare Disease Day. It is crucial to raise awareness about rare diseases and for healthcare professionals to receive appropriate education in this field. Proper awareness and knowledge enable healthcare professionals to diagnose and treat their patients efficiently, reducing the chances of misdiagnosis or delayed diagnosis, which can significantly affect a patient’s health.
As someone who has been personally affected by a rare disease, I understand the importance of proper diagnosis and treatment. Despite visiting several doctors, it wasn’t until I saw a genetic specialist that I received an official diagnosis of TRPS type 1, a rare genetic disease that affects my joints, hair, nose, and fingers. As I age, my bones continue to degenerate at a faster rate than a normal human being, leading to further health complications.
It can be challenging to find a healthcare professional who understands rare diseases. I have faced this issue myself, and so have many of my friends who live with different rare diseases. Proper education and awareness among medical professionals can create awareness and lead to increased research in this field.
To improve the situation, it is crucial to educate medical professionals about rare diseases. This will lead to greater awareness and more research into these diseases. Awareness campaigns such as Rare Disease Day can help raise awareness about these diseases and the need for increased research and medical attention. It is essential to create a more supportive environment for people with rare diseases, where they can find the answers they need and receive the care and support they deserve.Â
However, despite the growing awareness of rare diseases, there is still a significant lack of research and understanding surrounding them. Many people with rare diseases go undiagnosed or are misdiagnosed, leading to unnecessary suffering and even death. This is unacceptable and needs to change. I want to investigate why rare diseases aren’t talked about enough and why more research isn’t being done. I believe that raising awareness about rare diseases can help people find the answers they need and deserve.Â
Living with a rare disease doesn’t stop me from living my life, but I don’t hide it either. It has become a part of who I am and has inspired me to explore the medical field further. Raising awareness about rare diseases globally is crucial for people to find the answers and support they need. It took me seven years to receive an official diagnosis, and I cannot imagine how others might feel waiting for answers.
Therefore, I encourage everyone to bring awareness to rare diseases. It is crucial to educate medical professionals about rare diseases, increase funding for research and development, and raise awareness among the general public. By doing so, we can create a more supportive environment for those living with rare diseases and improve their quality of life. Let’s work together to ensure that people living with rare diseases receive the support and care they deserve. Post on your Instagram story to support the cause!