Patient Stories

Sharing the stories of people with genetic conditions. Have a story you'd like to share? Email [email protected]
No longer active on social media!

[Patient Stories @GreyGeneticsPod]

Patient Stories will finally be back with a third season in 2023! We are looking for an intern who would like to help with podcast planning and light editing. Interested? Email [email protected] #GeneChat (1/2)

[Patient Stories @GreyGeneticsPod]

"For diseases like EDS, those illnesses so ignored or misunderstood that patients can barely find a knowledgeable doctor, much less the genetic source of their condition, it may require those with intimate, untapped knowledge — patients themselves — to shepherd science forward."

[Isa Cueto @isabellacueto]

Ehlers-Danlos Syndromes are connective tissue disorders — previously considered rare, now increasingly seen as neglected — w/ a fraught history.

This is about #EDS patient-researchers using their expertise and ire to fight back, to forge ahead. NEW:

https://t.co/JSANA9Ymr7

[Patient Stories @GreyGeneticsPod]

No, this is not paid! The podcast makes $0. Ideally, this opportunity is for a prospective genetic counselor. Time spent on podcast is flexible and intern will be supported in their learning and toward their GC-related goals.

[Patient Stories @GreyGeneticsPod]

Patient Stories will finally be back with a third season in 2023! We are looking for an intern who would like to help with podcast planning and light editing. Interested? Email [email protected] #GeneChat (1/2)

[Kendall Ciesemier @kendallciese]

My mom’s story has long made me feel weird about my place in the abortion conversation. But, my disability is actually not a weapon against abortion access, like I have been made to believe. It’s an argument for it.

My latest for @nytopinion: https://t.co/vBR4flPnpq

[Carol Nowlen, MS, CGC @CarolNowlenCGC]

If anyone wants a quick link to a petition for a call to NSGC to start taking Requests for Proposals from new firms to lobby the US Government for CMS recognition so that we might be able to turn our attention to lobbying for our patients, it's right here: https://t.co/HymLWOeosF

[Chloe @imchloejane]

Just finished @ticktickboom on Netflix. I loved the movie so much and related on such a personal level as I also have Marfan Syndrome, the same condition that caused Jon Larson’s aortic aneurism. @Lin_Manuel I’m sad Marfans wasn’t mentioned but I loved the movie even so💖

[The Lily @thelilynews]

"There are many incredible medical professionals out there. But the ones I saw failed me when I needed them most," writes Mia Clarke.

https://t.co/Y3AMgqFtqC

[Grey Genetics @GreyGenetics]

There are still a few spots left in the Patient Stories Club! The first meeting is Monday. You can sign up here: https://t.co/ZRcx8pXKqY #GCchat #genechat #genetalk #genetics #geneticcounseling

[Patient Stories @GreyGeneticsPod]

THE PATIENT STORIES CLUB IS BACK! This club will allow those interested in #geneticcounseling to engage in conversations between peers, facilitated by a certified #genetic counselor! You can sign up here: https://t.co/uT9lExy07s
#GCchat #genetalk #genechat #pregc

[Grey Genetics @GreyGenetics]

You can listen to the new episode of Genotypecast discussing the recent @nytimes article here: https://t.co/suTimCy5Ch

@katie_stoll @sarahkliff @aatishb #GCchat #NIPT #geneticcounseling #genetalk #medtwitter #genetictesting

[Grey Genetics @GreyGenetics]

NYT published an article focused on false positive rates in NIPS/NIPT. The reaction on Twitter from genetic counselors was mostly critical.

Listen to the new episode of Genotypecast to hear GCs Eleanor Griffith and @katie_stoll discuss the implications of this article. #GCchat

[Patient Stories @GreyGeneticsPod]

@marleahdeank related episode! https://t.co/bVB33ZM48s

[Liz Mizerik, MS, CGC @lizmizerik]

Can’t get my recommended high-risk colonoscopy screening right now because I don’t have $800 toward a deductible lying around. My grandfather was dx at 29 with colon cancer and both my parents have had pre-cancer polyps in their 40s. Yay, American healthcare. 😑

[Patient Stories @GreyGeneticsPod]

Do you have a personal story related to NIPS / NIPT or other related genetic testing you’d like to share? Send an e-mail to [email protected]

[Grey Genetics @GreyGenetics]

If you can get past the use of the word “wrong” in the context of a screening test… (try subbing “false positive)- this is good article on some of the problems with NIPS tests and their misleading marketing in our profit-driven healthcare system. https://t.co/Se58BTfmeA

[Grey Genetics @GreyGenetics]

If you want to learn more about #EpidermolysisBullosa, check out our @GreyGeneticsPod episode with Silvia, who discusses her son's experience living with the condition: https://t.co/yN0FnPlT8k #GCchat #ebawareness #cureEB

[Grey Genetics @GreyGenetics]

We were saddened to hear about Nicky's recent passing, and our thoughts are with him and his family. If you are interested in supporting Nicky's family during this difficult time, you can donate for funeral expenses here: https://t.co/sJYqbJ8B6x. #GCchat #cureEB #EBawareness

[Patient Stories @GreyGeneticsPod]

We would also Love to share more #abortionstories related to genetics. Prenatal GCs - you have a window on this issue that most people just don’t have. #ReproductiveJustice #AbortionRights @NSGCPrenatalSIG #GCchat

[Patient Stories @GreyGeneticsPod]

😊🤗 ♥️🙏 There will be a new season before too long! Piloting a new format with interviews btw patients and a loved one (parent/child/SO/caregiver/close friend/GC/you tell us!). We’ll provide some tools to guide you and then put out your conversations!

[Kelsey Fusco, MS, CGC @KFusco_GC]

Spotify wrapped told me that #1 podcast of 2021 was @GreyGeneticsPod - thank you @elo81 🧬👏🏻 #SpotifyWrapped https://t.co/1O2RjWtokb

[Patient Stories @GreyGeneticsPod]

Thanks to @StoryCorps for the inspiration and many wonderful stories they have shared. Interested in sharing your story in this new format? DM us or better yet e-mail [email protected] #PatientStories #StoryCorps @GreyGenetics #GCChat

[Patient Stories @GreyGeneticsPod]

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