Imagine being diagnosed and having to fend for YOURSELF over a disease, because it is considered “too rare” for international research into finding a cure, too rare for government funding and “too rare” even for national recognition in your own country
Imagine relying on the knowledge and experience of others in a dedicated forum who are more likely to be better informed about your condition than a medical professional.
Imagine having a forum be your first go to place for answers in the case of a medical emergency, rather than your local hospital; because all that doctors will probably do is overlook your condition or worry and think you’re “crazy”.
Imagine having to fight your doctor’s decision for a second opinion, or never being able to relax, because, at any moment, this disease can resurrect from the dead.
Welcome to the daily struggles I, 16 others in Ireland; over 1,500 in America and over 2,000 worldwide, (and that’s just on Facebook,) face living with the same particular “rare disease”. Why rely on other members over doctors? In the event of a rare disease, unless life threatening, doctors see little benefit for finding a cure. But for the small minority, it could mean the difference between a good quality of life, or bad.
I have a disease called Histiocytosis, a rare blood cancer, which, if you’re lucky enough to survive it, as a compromise, you’re stuck with it for life. This disease which was cursed on me at three years old was treated with chemotherapy and was in remission for ten years. Unluckily, I had late effects, in the form of a degenerative condition called ND CNS I was diagnosed with at 13 years old. Five years of fighting a battle that was inevitable to be lost, I had to surrender to a wheelchair because of no treatment to prevent my condition deteriorating. At 18 years old I faced a transition which could have been avoided, if only Irish doctors had more empathy and compassion towards the lives of patients with rare diseases. I am just as entitled to a good quality life as anyone else, but I am denied this simply because of a disease considered too uncommon to be worth funding for a cure. A disease no one takes a second glance at because “it’s unlikely to affect” them or a loved one.
The unfortunate reality is that the world is run by money, and the sad case is that if an illness doesn’t affect enough people to cause an impact, that illness is swept under the carpet and turned a blind eye to. Instead we should be at disposal to help; Empathetic to assure an individual a life of stability, despite the statistics of an illness likelihood, because life is about helping those less fortunate, and nothing is more unfortunate than having to face a problem alone. Nothing is more isolating than knowing you are the black sheep that no one wants to help.
A rare disease may be unlikely to knock on your door, but if the day comes that it does; wouldn’t you like to be assured there is a cure? Fight for rare disease awareness. Care for rare. Because I’m sure you wouldn’t like to find yourself facing a rare disease someday that no one gives a second thought about.
Niamh ni Ruarí