Ep 53: Super Mini Recap of the 34th Annual Marfan Conference!

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We are so excited to share this recap of the 34th annual Marfan Conference in Stanford. Andy talks about the amazing activities, medical appointments, workshops, seminars and more! And she shares how beneficial the conference is on so many levels. She talks about her performance with Katie Lasky Lovebomb and Joleen and Alex ask questions and we discuss the importance of community. Joleen reads a listener iTunes review! And we share some sound clips from the performance and from a video with Andy’s mom.

To watch the live stream with Andy, Katie Lasky, Dominga Noe and Austin Carlile go here: https://www.facebook.com/katie.lasky.92/videos/10160681213145080/?hc_ref=ARTZg_oRs4YoBJSrMzp9FXs4zcDJ6dyKFhGSWFNkZVEjcHg02-A5muvri8K2FeSZpB0

MEMORABLE MOMENTS:

“How does your filter process stuff? Oh I don’t have one!”

“We can’t cry. We don’t have enough time!”

“I’m picturing this is like Comic Con for Marfan stuff!”

“Did you get your degree from Wikipedia?”

“Honey, this is soap!”

“Everyone who has ever gone to the Marfan Conference wishes they would have gone sooner.”

SUPPORT THE PODCAST ON PATREON:

Recording this podcast is rewarding and fulfilling, but it’s also a lot of hard work. We want to bring you more shows like this one and we want to continue to grow our audience and we want to stay ad-free! In order to do this, we have set up a Patreon page where we are offering a bunch of really cool rewards and perks in exchange for small monthly contributions. We would love your support! So check out our Patreon page today and donate if you can! https://www.patreon.com/dealwithitpodcast

LINKS:

Want to get an email when new episodes are released? Subscribe via email here: http://dealwithitshow.com/subscribe-via-email/

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

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

Follow the Marfan Foundation on Facebook: https://www.facebook.com/pg/TheMarfanFoundation/posts/

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

Follow us on Twitter @dealwithitpod: https://twitter.com/dealwithitpod
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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.

MEMORABLE MOMENTS:

“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.”

 

SUPPORT THE PODCAST ON PATREON:

Recording this podcast is rewarding and fulfilling, but it’s also a lot of hard work. We want to bring you more shows like this one and we want to continue to grow our audience and we want to stay ad-free! In order to do this, we have set up a Patreon page where we are offering a bunch of really cool rewards and perks in exchange for small monthly contributions. We would love your support! So check out our Patreon page today and donate if you can! https://www.patreon.com/dealwithitpodcast

LINKS:

Want to get an email when new episodes are released? Subscribe via email here: http://dealwithitshow.com/subscribe-via-email/

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

Follow us on Twitter @dealwithitpod: https://twitter.com/dealwithitpod
Follow us on Instagram @dealwithitpodcast: https://www.instagram.com/dealwithitpodcast/
Like us on Facebook: https://www.facebook.com/dealwithitpodcast/

Remember to rate, review and subscribe on iTunes: https://itunes.apple.com/us/podcast/deal-with-it/id1244513630?mt=2

Ep 37: Marfan Awareness Month, Part 1 with Michael Sielaff

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Actor, improviser, comedian and activist Michael Sielaff joins us for part 1 of this special 2 part Marfan Awareness Month series. We share our Valentines day stories and gush over our Minnesota roots, and Michael shares his Marfan diagnosis story, and what it was like to be diagnosed as a young adult and having to choose between pursuing theater or college basketball. We talk about our experiences at the National Marfan Conference and how Marfans has affected dating and marriage. We talk about the importance of yearly checkups, taking our medication, and how beneficial a diagnosis can be.

Andy and Michael go through the signs of Marfan Syndrome one by one 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

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

And remember Know Fight Win! #knowFightWin

Get involved with Michael Sielaff’s passion project Laughtivism here: https://www.facebook.com/groups/1552528655015826/

THE CHECK-IN: Andy and Joleen have a very special Valentine’s Day check-in, and share how they celebrated in their own non-traditional ways.

MEMORABLE MOMENTS:

“Mom, you need to understand that this is your son’s life. And Michael, you have to know what a mother goes through.”

“Its hard to keep my Marfan Syndrome a secret when my heart is going CLICK CLICK CLICK”

“We’re lanky! I like lanky!”

“Doesn’t Abe Lincoln have Marfan Syndrome?”

“Oh no, my mom has stretch marks! Am I a woman?”

“I remember a 3rd grader once looked me up and down as said, ‘dude, you’re going to die young'”

SUPPORT THE PODCAST ON PATREON:

Recording this podcast is rewarding and fulfilling, but it’s also a lot of hard work. We want to bring you more shows like this one and we want to continue to grow our audience and we want to stay ad-free! In order to do this, we have set up a Patreon page where we are offering a bunch of really cool rewards and perks in exchange for small monthly contributions. We would love your support! So check out our Patreon page today and donate if you can! https://www.patreon.com/dealwithitpodcast

LINKS:

Want to get an email when new episodes are released? Subscribe via email here: http://dealwithitshow.com/subscribe-via-email/

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 Michael on Facebook: https://www.facebook.com/sielaffmichaelj

Follow Michael on Twitter: https://twitter.com/michaeljsielaff

Follow Michael on Instagram: https://www.instagram.com/michaeljsielaff/

Get involved with Michael Sielaff’s passion project Laughtivism: https://www.facebook.com/groups/1552528655015826/

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

Follow us on Twitter @dealwithitpod: https://twitter.com/dealwithitpod
Follow us on Instagram @dealwithitpodcast: https://www.instagram.com/dealwithitpodcast/
Like us on Facebook: https://www.facebook.com/dealwithitpodcast/

Remember to rate, review and subscribe on iTunes: https://itunes.apple.com/us/podcast/deal-with-it/id1244513630?mt=2