Proclaim: article was written in mother tongue and translated. Apologies if not the best quality.
A rare disease, by definition is any disease that affects a small percentage of the population. Most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms may not be immediately apparent and might develop or worsen as the person ages.
This also means that only a small minority of the population will be diagnosed with a rare disease or still are presently suffering from a rare health condition living undiagnosed.
To this date, there are over 6000 different rare diseases affecting millions of people worldwide. Truth is more people than expected might be actually suffering from symptoms of a rare health condition while not being able to have the condition diagnosed as there is still very much an apparent lack of knowledge towards the vast varieties of rare health conditions people suffer from.
Addison Disease, Juvenile Rheumatoid, Colonic Pseudo-Obstruction, Cushing Syndrome, Facial Hemiatrophy conditions are just some of the few to mention.
With little or limited understanding of the vast varieties of rare diseases and conditions, it is much more difficult to treat those specific conditions. Moreover, it ends up affecting the quality of life and carries with them inconveniences for patients and their families, affecting simple tasks in their daily lives.
Often, activity as simple as eating with families and friends could post challenges for both parties. Patients who suffer from rare diseases such as Gastroparesis would not be able to enjoy and share a meal like a normal individual. Thus, affecting the quality and experience of a meal shared together.
Additionally, rare disease sufferers often faced a barrier for participation in other leisure activities as ordinary as playing sports, going to the mall and catching a movie with friend in a cinema. As a result, this could prove to be a tremendous isolating and discouraging experience for rare disease sufferers, making navigating daily activities in life a dreadful task.
As such, every last day of February, an observance held by raredisease.org, named Rare Disease Day was established in 2008 as an effort to raise awareness for rare diseases and conditions. The event aims to improve access of treatment and medical representation for sufferers due insufficient treatments and lack of knowledge in the medical profession concerning rare diseases then and now. The National Organization for Rare Disorders have also been joined forces by the Global Genes Project to promote Rare Disease Day every year.
With the help of technology, sufferers from around the world could unite and find each other. Thus, providing support for one another in their never ending battle towards health. A global virtual rare disease community has hence formed.
For sufferers, awareness in rare diseases is extremely crucial to bring about more understanding from the public, better treatment/diagnosis in medicine and allow potential for improvement in a patient’s quality of life – hope.
There’ so much more that could be done to achieve a much greater positive impact with the help of technology.
How would you like to contribute and see changed/improved?
With this, I encourage anyone who are currently a sufferer, or are suffering from a specific condition undiagnosed to come together and push forward this movement united. The reason anyone would hide in the dark could very simply be due to fear of rejection from your community and circle of support. With more understanding from the public, people are going to be better informed and therefore learn to be more accepting towards others who are living life dependant on alternative measures. These three factors are important for anyone who’s read this article to take away:
- We are all uniquely different as individuals
- Nobody is too rare or too uncommon to be part of any society
- Quoting Ellen DeGeneres “Be kind to one another”
More awareness means more hope. You’ll also help others who are in similar situations and who are fighting courageously to have their lives back.
Most importantly, don’t be pushed by your fear, be led by your dream!
Don’t be afraid! :)