Longing to Belong
Check out this article written by my dear friend Britta Dornan, MPA . It's about being a rare disease patient, feeling isolated, longing to belong, and learning how to advocate for yourself when you may well be the only person you know impacted by a specific rare disease.
Getting that diagnosis, whether for yourself, or for your child, brings forth a barrage of emotions, doubts, fears, and often times, grief. For me personally, the journey to rare disease advocacy came at a horrible price - the sudden death of my 4-year-old son Travis because of an undiagnosed rare disease. Once I received his diagnosis from the medical examiner, I knew I had to do something to prevent other children from dying of undiagnosed rare diseases. But, taking into account the compound effects of multiple losses in a six-year period, I feared I was too much, that all that death would just make people run from me.
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Just months after Travis' death, I attended Rare Disease Day at National Institutes of Health. There, I met people from EveryLife Foundation for Rare Diseases . A couple months later, we attended Rare on the Road. We were warmly embraced, welcomed and made to feel Travis' story, our story, could make a difference.
If you or someone you love gets a rare disease diagnosis, know that you don't have to be alone. Know that you can find support, resources for starting your advocacy journey and most importantly, a vibrant, diverse community ready to embrace you and lend an ear, or a shoulder to cry on, or even a strong hug to help you hold it all together when you're feeling like you don't belong in "the regular world". As Britta says, there can be hope and healing through the power of advocacy and the support of community.