Ep 38: Marfan Awareness Month, Part 2 with Avi Silver

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Improvisor and poet Avi Silver joins us for part 2 of this special 2 part Marfan Awareness Month series. Avi shares his diagnosis story and a quick family history including how he is a triplet. His Father and Sister also have Marfan Syndrome and we talk about how different Marfan Syndrome expresses itself even within the same family. Avi and Andy compare back brace stories and commiserate together and Avi talks about having osteopenia (weak bones.) Avi shares his harrowing aortic dissection adventure involving an emergency plane ride and a heroic supportive family. Avi’s mom is AMAZING. Avi talks about having 9 eye surgeries and several retinal detachments and shares another crazy story, this time about his vision, including being told that he may never be able to read again. Avi talks about improv, poetry and his desire to try standup comedy, which he absolutely must do! We ask Avi some personal questions and get some amazing insight and leave with an inspirational story!

Andy and Avi go through the signs of Marfan Syndrome and compare notes and we talk about the Marfan Foundation events going on around the country. You can get more info here: https://www.marfan.org/get-involved/fundraising-events/walk

For more information about the camp Avi was talking about visit here: https://chailifeline.org/about

We thank you so much for listening! If you’d like more Marfan action we recommend listening to episodes 1, 2, and 9, 37 and actually every episode touches on different aspects of life with Marfan Syndrome, through Andy’s experiences.

And remember Know Fight Win! #knowFightWin

THE CHECK-IN: Andy and Joleen talk bruising, bleeding and falling and the surprising ways people react to pain.


“Let’s play the game, “What’s that clicking sound?””

“You just kept acting? Damn Meryl Streep!”

“I don’t want to go to the ER right now! I’m having too much fun!”

“I got one hour a day to do whatever I wanted!”

“Get out of the pool andy! Never!”

“My friends loved my back brace. Let me punch you!”

“Oh I could go blind? Why the ef didn’t you tell me?”

“I thought I was just Emo, but nope, I was depressed.”

“My little big heart. That should be the name of your memoir!”

“I wasn’t super involved in my health, as a 7 year old.”

“By the way, there’s a really good chance you may never be able to read again.”

“I just said, screw it. And I took my shirt off. And no one said anything. It was a turning point. I shouldn’t be ashamed about anything about my self.”

“Everyone can see that I’m 6 foot 9. I can’t not stand out. So I might as well stand out positively.”



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We want to hear from you! Email us your diagnosis stories, share any inspirational quotes, questions, comments, and reactions. What topics should we discuss? What are your New Years Resolutions? Here’s a link to contact us: www.dealwithitshow.com/contact

Find Avi at Da Poetry Lounge: http://dapoetrylounge.com/


Info about the camp Avi talked about: https://chailifeline.org/about

You can donate to the Marfan Foundation all month long at www.Marfan.org/dayofgiving18

The signs of Marfan Syndrome: https://www.marfan.org/about/signs

National Alliance on Mental Illness support: https://www.nami.org/Find-Support

This podcast is edited and produced by Alex Stein. Listen to his podcast here: https://www.thealexsteinpodcast.com

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