Dysautonomia Chick Storming Capitol Hill is the Best News Ever

It has been said that there is strength in numbers, and we are much stronger together!

That’s probably why I connected with Shira Strongin, a young teen who lives with multiple medical conditions including a connective tissue disease called Ehlers-Danlos (EDS), chronic pain from reflex sympathetic dystrophy (CRPS/RSD), and dysautonomia.

Her writing and established blog are a way that chronically ill teens can support each other to succeed.

Blogging has been there for her through it all. It helps her process.

For some reason, things don’t seem so scary when she can just “backspace” her problems away.

Blogging is such a huge outlet, not just for her, but for others too. It’s a way to connect to others and share stories.

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When living in the world of the dysautonomia, Ehlers-Danlos, CRPS/RSD, and other chronic illnesses, we often meet other medically challenged friends.

Together, we can establish an instant bond because they truly understand the daily challenges of what we live with.

And while we may meet these friends briefly through online support groups, at a medical conference, or at a doctor appointment, it is so important to hold on to them, and to nurture the friendship and support each other no matter what that support may look like.

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And Shira is someone we can learn from as she advocates on Capitol Hill to educate and lobby for Rare Disease Day.

She hopes that she will build support for people who do not define themselves by their illness or limitations and choose to make a difference in the world we live in.

It’s inspiring and hopeful to hear about young teen who wants to raise awareness about these illnesses and gather funds for organizations that support the rare disease community.

I guess it’s true that when our lives have been positively impacted by so many, we want to encourage everyone to give back.


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