While the first term might be familiar to you you may wonder what an orphan disease is. Think of it this way: a chronic illness is something you wake up with every morning, it may stay with you throughout the rest of your life and while it might not be the cause of your death it most likely will contribute to your death in some fashion. An orphan disease is something you might be born with or may discover further down your life path. The drugs to treat this illness are rare and cost billions to produce, and while there are drugs that get produced for some of these orphan diseases the companies that produce the drugs do so because governments offer huge tax incentives for production world wide. Oh and the doctors that treat orphan diseases are not common whereas the docs that treat chronic illnesses are readily available.
You will recognize these names: Arthritis, Asthma, cancer, diabetes, Hepititis C and HIV/AIDS. You won’t recognize these names because they are orphan diseases: ABCD Syndrome, Gardener-Diamond Syndrome, Mac Dermot Winter syndrome, PHACE Syndrome, and the list goes on.
How do you cope with the syndromes and illnesses? What happens to you when you are diagnosed with a chronic illness or an orphan disease?
You might begin by being thankful that there is a name for what you are dealing with but you also might feel isolation, anger or rage, denial, a desire to bargain with god or whatever powers that be you identify with, You might become depressed. Why bother? You might also feel relief at the thought that what you have is real. The pain from the arthritis is real and can, on some level, be managed. And yet you might feel alone in the struggle. Questioning and feelings of defeat are common. These are feelings worth exploring and will enable you to move beyond where you are to where you need to go to.
You are not alone in this and there is a way through it. You can learn to create a new life balance, negotiate the mine field, and create a better place for yourself. Along the way you may come to understand new things about yourself, you may discover hidden strengths and abilities that have been dormant. You might not be able to make lemonade from what you are facing but you just might brew up a better concoction for yourself.