• 22q Podcast

  • 著者： Becky White
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22q Podcast

著者： Becky White
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  • The 22q Podcast is a place for individuals connected to the 22q community to share their stories. We will hear from those living with 22q, parents of 22q children, & medical/educational professionals who will share their knowledge, successes and struggles about this syndrome. 22q11.2 deletion syndrome is a disorder caused by small missing portions of the 22nd chromosome. This can result in a unique combination of over 180 different symptoms. It occurs in approximately 1 out of every 2,000 live births, it is the second most common genetic disorder after Downs Syndrome.
    Becky White
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  • Ep. 35 Abby and Amy's 22q Story

    Ep. 35 Abby and Amy's 22q Story
    2024/02/07

    Abby is a fraternal twin and within her first few months of life her mom Amy could tell that something was a little different with Abby but she didn't know what. She had speech delays, gross motor delays but just didn't know what it could be. Then at the age of 7 Abby was going to get her tonsils removed with the doctor, who happed to have studied 22q, was able to look at Abby and tell that she had 22q. That is when she was sent for genetic testing which then confirmed his hypothesis.


    This episode was recorded on May 17, 2023


    •••••••••••••••••••


    Within this episode we discussed:


    • acid reflux

    • speech delays

    • gross motor delays

    • 7 had her tonsils removed and the doctor had studied with doctor who discovered 22q and suspected that Abby had VCSF.

    • Genetic testing confirmed that she had 22q.

    • Syracuse specialist to do a series of tests

    • Pharyngeal flap speech

    • Scoliosis

    • Spinal fusion surgery at CHOP
    • ⁠22q Center Children's Hospital of Philadelphia⁠



    If you would like to contact the 22q Podcast with any questions, comments or if you are interested on being on this podcast email Becky at 22qpodcast@gmail.com. Don't forget to subscribe and share this podcast to help raise awareness about 22q. And never forget 22q family that YOU are not alone.

    ⁠Instagram - @22q.podcast⁠

    ⁠Facebook - @22qpodcast⁠

    ⁠YouTube - @22qpodcast⁠

    Email - 22qpodcast@gmail.com

    #22qpodcast
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    28 分
  • Ep. 34 Mikey DeRaud drumming through life with 22q

    Ep. 34 Mikey DeRaud drumming through life with 22q
    2024/01/29

    When Mikey was younger he didn't know he even had 22q until his open heart surgery at the age of six. He started to notice that he had health issues that his friends and classmates didn't have to contend with. Mikey never let his diagnosis hold him back and continued to follow his passion for music, especially playing the drums. Picking up his first set of drum sticks at the age of four, Mikey realized he had a superpower. He was able to play the drums by ear and did not have to read sheet music. His passion for drums landed him spot in his current band named Hills Block View. Check out the links below to listen.


    This episode was recorded on May 8, 2023


    •••••••••••••••••••


    Within this episode we discussed:


    • BAND - Hill Blocks View - Website
    • Instagram @hillblocksviewofficial
    • Facebook @hillblocksviewofficial
    • YouTube Page @hillblocksviewofficial
    • Spotify
    • Apple Music

    • Knee difficulties

    • We Got The Beat - Drum Class

    • Roosevelt School For The Arts, Fresno, CA

    • Giants Baseball Fan @sfgiants

    • Bullying

    • CHOP - 22q Magazine Cover Model - 22q11.2 Deletion Bringing the 22q11.2 Deletion Into the 21st Century June 22-25 2000. The Children's Hospital of Philadelphia. @childrensphila

    • 22q Center Children's Hospital of Philadelphia

    • Mikey on Instagram @mikeyplaysdrums


    If you would like to contact the 22q Podcast with any questions, comments or if you are interested on being on this podcast email Becky at 22qpodcast@gmail.com. Don't forget to subscribe and share this podcast to help raise awareness about 22q. And never forget 22q family that YOU are not alone.

    Instagram - @22q.podcast

    Facebook - @22qpodcast

    YouTube - @22qpodcast

    Email - 22qpodcast@gmail.com

    #22qpodcast
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    31 分
  • Ep. 33 Shelby and Stacy - Spreading love one quilt at a time

    Ep. 33 Shelby and Stacy - Spreading love one quilt at a time
    2024/01/23

    Shelby is an adult living with 22q and has a passion for sewing. She began sewing at the age of 11 and has been sewing every since. Making quilts for individuals with 22q and mailing them across the country. She has made over 43 quilts to date and doesn't intend on stopping any time soon.


    Her mom, Stacy also shared how scary and challenging Shelby's first few years of life were. Shelby had genetic testing done around the age of one but nothing came back positive. So at two and half years old, she sent to a clef and pallet team, who were able to diagnose her and test her for 22q. Stacy remembers receiving that phone call that confirming that her daughter had 22q. As she hung up the phone she felt numb and crushed all at once. She knew she had to learn Shelby and what this new diagnosis meant for her baby girl.


    Links:

    Shelby's Stories FB: https://www.facebook.com/groups/450865518418577/?ref=share_group_link


    22q Postcard Swap: https://www.facebook.com/groups/270932664985684/?ref=share_group_link


    Amazon Wish List: https://www.amazon.com/hz/wishlist/ls/1K2FHPHP6UIZM?ref_=wl_share


    Walmart Wish List: https://www.walmart.com/registry/ER/f426d3b8-347b-42b8-8a9d-5240a9b99bb8


    ••••••••••••••••••• 


    Within this episode we discussed:


    • Teaching Shelby to advocate for herself

    • 22q family foundation

    • Nationwide National Confrence for 22q

    • 2 sinus surgeries

    • 2 hernia repairs

    • Left Knee Surgery - patella instabilities

    • Hypoparathyroidism

    • “I have 22q but 22q doesn’t have me.” -Shelby
    • ⁠⁠⁠⁠
    • Shelby on Instagram @


    If you would like to contact the 22q Podcast with any questions, comments or if you are interested on being on this podcast email Becky at 22qpodcast@gmail.com. Don't forget to subscribe and share this podcast to help raise awareness about 22q. And never forget 22q family that YOU are not alone.

    Instagram - @22q.podcast

    Facebook - @22qpodcast

    Email - 22qpodcast@gmail.com

    #22qpodcast
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    39 分

あらすじ・解説

The 22q Podcast is a place for individuals connected to the 22q community to share their stories. We will hear from those living with 22q, parents of 22q children, & medical/educational professionals who will share their knowledge, successes and struggles about this syndrome. 22q11.2 deletion syndrome is a disorder caused by small missing portions of the 22nd chromosome. This can result in a unique combination of over 180 different symptoms. It occurs in approximately 1 out of every 2,000 live births, it is the second most common genetic disorder after Downs Syndrome.
Becky White
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