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 waiting years for the correct diagnosis and in turn waiting years for treatments.

8. Having a rare disease means trial and error in terms of assistive technology. . .some things may work but others may make life more difficult.

Having Mitochondrial Disease means having a support team of my amazing family, friends, doctors, and fellow MEPAN warriors.

For more information on Mitochondrial Disease please visit https://www.umdf.org/

To learn more about the research fund my family started please visit https://www.classy.org/campaign/research-fund-logan-sloane-aronson-in-honor-of-sydney-breslow/c126518

Written by:
Sydney Breslow

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