#marfans — Public Fediverse posts

“There appears to be a bidirectional relationship between connective tissue disorders and ME/CFS: underlying connective tissue abnormalities may increase susceptibility to ME/CFS, while #MECFS may aggravate connective tissue pathology.” #pwME #EDS #Marfans https://www.preprints.org/frontend/manuscript/88899e80acc1ba7321d728e194e2099b/download_pub?fbclid=IwZnRzaARzBQ5leHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEelMia1M169yC7F9WBCL4ZHz27KoAApa4WvoQlbmoenK-wunVny4sgJ9hPaDg_aem_wRRfIVF2u5A4qJe7DE1qAw

“There appears to be a bidirectional relationship between connective tissue disorders and ME/CFS: underlying connective tissue abnormalities may increase susceptibility to ME/CFS, while #MECFS may aggravate connective tissue pathology.” #pwME #EDS #Marfans https://www.preprints.org/frontend/manuscript/88899e80acc1ba7321d728e194e2099b/download_pub?fbclid=IwZnRzaARzBQ5leHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEelMia1M169yC7F9WBCL4ZHz27KoAApa4WvoQlbmoenK-wunVny4sgJ9hPaDg_aem_wRRfIVF2u5A4qJe7DE1qAw

“There appears to be a bidirectional relationship between connective tissue disorders and ME/CFS: underlying connective tissue abnormalities may increase susceptibility to ME/CFS, while #MECFS may aggravate connective tissue pathology.” #pwME #EDS #Marfans https://www.preprints.org/frontend/manuscript/88899e80acc1ba7321d728e194e2099b/download_pub?fbclid=IwZnRzaARzBQ5leHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEelMia1M169yC7F9WBCL4ZHz27KoAApa4WvoQlbmoenK-wunVny4sgJ9hPaDg_aem_wRRfIVF2u5A4qJe7DE1qAw

“There appears to be a bidirectional relationship between connective tissue disorders and ME/CFS: underlying connective tissue abnormalities may increase susceptibility to ME/CFS, while #MECFS may aggravate connective tissue pathology.” #pwME #EDS #Marfans https://www.preprints.org/frontend/manuscript/88899e80acc1ba7321d728e194e2099b/download_pub?fbclid=IwZnRzaARzBQ5leHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEelMia1M169yC7F9WBCL4ZHz27KoAApa4WvoQlbmoenK-wunVny4sgJ9hPaDg_aem_wRRfIVF2u5A4qJe7DE1qAw

@KellyKellyKelly I've have heard it's possible to also have #Marfans with shorter stature although minority. My eldest was thoroughly checked dx EDS in an hour's app with the top Hypermobility CTD rheumatologist in the UK prof Grahame because son has Pectus #Excavatum & later developed scoliosis we both have marfanoid sign of longer armspans than height, I also have longer thigh bone which an wheelchair OT should mean taller height he actually thought I got my 5ft 3 height wrong!

This is a call to #MedMastodon for assistance! My team is looking to recruit patients with #Marfans or #LoeysDietz for a simple survey (~20 min) about their #gynecologic and #reproductive health. Please pass along to relevant physicians/patients.

Details can be found at:
https://marfan.org/research/current-studies/

To our knowledge, this is the first of its kind to characterize these aspects of health in these populations. Special thanks to the Marfan's Foundation @[email protected]!