What it means to be rare. . .
Yesterday was Rare Disease Awareness Day and as a person living with Mitochondrial Disease this day made me reflect on what having a rare disease means. 1. Having a rare disease means taking close to 40 vitamins a day, all prescribed by my doctor, without truly knowing which ones work and which ones don't. 2. Having a rare disease means being lonely sometimes because the "family" of people who are rare like you don't live close by and only get together once a year at the national symposium. 3. Having a rare disease means meeting therapists and other medical professionals who may have never heard of a Mitochondrial Disorder. 4. Having a rare disease means educating people about your disability in terms of your strengths and limitations. 5. Having a rare disease means being uncertain about the future in terms of disease progression. 6. Having a rare disease means being positive and hopeful that one day there will be a cure. 7. Having a rare disease means