February 28: Rare Disease Day

On this last day of the shortest month of the year, I wish you a Happy Rare Disease Day! There are thousands and thousands of unfamiliar conditions which plague millions and millions of people. The one disease near and dear to me is Mitochondrial Disease...although, it actually is NOT a rare disease. Mito affects more children than all children affected by cancer. And yet, Mito is relatively unknown.

Due to its sparse knowledge in the medical world, Mitochondrial Disease is often misdiagnosed as other conditions—chronic fatigue syndrome, fibromyalgia, depression and somatoform disorders. Years and years pass going to countless doctor appointments and enduring endless tests which often yield inconclusive results, and yet no definitive diagnosis is usually ever made. Many folks often pass away never knowing they have Mitochondrial Disease. If enough crazy symptoms present themselves requiring medical intervention, one can be classified as having Munchausen Syndrome—a mental illness in which one feigns illness and is associated with severe emotional difficulties. Nothing can be more devastating than not having the medical community believe one’s symptoms are real.

On this day of raising awareness for all rare diseases, show your support to those around you. When you hear someone has a medical condition which sounds unfamiliar and foreign, take the time to do an internet search on the illness. Find out ways to help your companion live his best life. And most importantly, be a listening ear. Navigating the medical system can be exhausting and time consuming for a healthy person, but then add on to that having a chronic illness, one can nearly be broken from gross expenditure of energy. When tears stream down a down-trodden face and sobs swell from the depths of one’s soul, offer your comfort and support. Assure the person that better days are to come; tomorrow is a new day with endless possibilities.

To all my friends with rare medical conditions, I wish you all the best. I hope each day becomes easier as you learn to cope with your chronic illness. Each day is a challenge to either let your health rule your live or to rise up and overcome your symptoms. As hard as some days may be, remember you are never alone. We are all in this fight together, and together we shall accomplish great things. May this year bring much awareness to rare diseases.