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Hypermobile Ehlers-Danlos Syndrome: An Invisible Condition

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Manage episode 393067009 series 3051496
Contenu fourni par Grey Genetics. Tout le contenu du podcast, y compris les épisodes, les graphiques et les descriptions de podcast, est téléchargé et fourni directement par Grey Genetics ou son partenaire de plateforme de podcast. Si vous pensez que quelqu'un utilise votre œuvre protégée sans votre autorisation, vous pouvez suivre le processus décrit ici https://fr.player.fm/legal.

Alexandra Parker is a senior student at Sarah Lawrence College. Alex describes her journey to a diagnosis of Hypermobile Ehlers-Danlos Syndrome and the skepticism that she faced from medical professionals. She had to adjust emotionally and physically following her diagnosis with respect to sports. Self-advocacy has become an important part of Alex’s day to day. She discusses the importance of “being believed” in a medical setting and encourages others to seek out different medical professional expertise when needed.

Alex was interviewed by guest host Kelsey Crocker, a second year genetic counseling student.

Links and Resources

The Ehlers-Danlos Society

Check out other Patient Stories podcast episodes.

Read other Patient Stories on the Grey Genetics Patient Stories Page.

Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club!

Do you want to support Patient Stories? You can make a donation online!

Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone.

Looking for a place to collect your family history and share with relatives? Check out the FamGenix app.

Grey Genetics is no longer active on social media. To receive occasional email updates, sign up for our mailing list⁠.

  continue reading

94 episodes

Artwork
iconPartager
 
Manage episode 393067009 series 3051496
Contenu fourni par Grey Genetics. Tout le contenu du podcast, y compris les épisodes, les graphiques et les descriptions de podcast, est téléchargé et fourni directement par Grey Genetics ou son partenaire de plateforme de podcast. Si vous pensez que quelqu'un utilise votre œuvre protégée sans votre autorisation, vous pouvez suivre le processus décrit ici https://fr.player.fm/legal.

Alexandra Parker is a senior student at Sarah Lawrence College. Alex describes her journey to a diagnosis of Hypermobile Ehlers-Danlos Syndrome and the skepticism that she faced from medical professionals. She had to adjust emotionally and physically following her diagnosis with respect to sports. Self-advocacy has become an important part of Alex’s day to day. She discusses the importance of “being believed” in a medical setting and encourages others to seek out different medical professional expertise when needed.

Alex was interviewed by guest host Kelsey Crocker, a second year genetic counseling student.

Links and Resources

The Ehlers-Danlos Society

Check out other Patient Stories podcast episodes.

Read other Patient Stories on the Grey Genetics Patient Stories Page.

Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club!

Do you want to support Patient Stories? You can make a donation online!

Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone.

Looking for a place to collect your family history and share with relatives? Check out the FamGenix app.

Grey Genetics is no longer active on social media. To receive occasional email updates, sign up for our mailing list⁠.

  continue reading

94 episodes

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