Linseigh

@linseigh
143 Followers
31 Following
345 Posts

Rare disease advocate, storyteller, performer, survivor.

#preventNEC

News Featurehttps://www.fox5atlanta.com/news/georgia-grad-student-defies-medical-expectations-25-years-after-devastating-diagnosis
#Cambridge Digital Humanities Storyhttps://www.cdh.cam.ac.uk/media/blog/understanding-faust/
#MadameNoire Storyhttps://madamenoire.com/1327729/nec-neonatal-illness/
LinseighSep 23, 2023

I signed my first autograph today and all I did was eat eggs benedict backstage

#theatrekid #thedriftersgirl #uktour #actor #understudy #blackmastodon #brunch #theatre

LinseighApr 14, 2023
@naomilawsonjacobs This one is especially for ppl who feel entitled to publish about me (including full legal name and medical history) w/o my consent; slapping my face on slideshows & publications as extra credit; bringing me in for show & tell; taking credit for my work, etc etc
LinseighApr 13, 2023

If you’re in London, you can see me perform live in Mi$fortune at the #GoldenGoose #Theatre April 18th - 22nd: https://www.goldengoosetheatre.co.uk/misfortune

#actress #newwriting #play #offwestend #fringe

MI$FORTUNE | Golden Goose Theatre

Goldengoosetheatre
LinseighApr 13, 2023
Kara ShallenbergApr 10, 2023
@linseigh I’m a little late, but I was just scrolling through the #spoonie posts to feel less alone and offer some support. My #RareDisease is #PulmonaryArterialHypertension. Twelve in a million of us have it. It’s awful! Hang in there, fellow #spoonie 🌻
Show threadLinseighApr 13, 2023
@Kayray thank you so very much 🥰And it’s never too late ✨
LinseighMar 20, 2023

I know I’ve been saying for years that I should really get into voice work. I’ve finally recorded a commercial reel!

Thank you Mike & JP at The #ShowReel for your incredible guidance!

Please dm if you’d like to work together✨

…

#londonactor #voiceover #voicereel #showreel #commercial #reel #voiceartist #newtalent #blackactress #disabledactor #demo #seekingrepresentation #voiceactor #blacktalent

Show threadLinseighMar 20, 2023
@stevegis_ssg Thank you for bringing us hope🙏🏽🙏🏽
LinseighMar 20, 2023
Show threadSteve GisselbrechtMar 20, 2023

@linseigh
I think people see research energy and money as a resource to compete for. And I get it, but it's shitty. That's why I like the NIH's current approach, which is to treat "rare diseases" as a common field of focus; even if one only affects hundreds of people, there are hundreds of these populations of survivors facing common elements to their challenges.

Our proposal aims to address 77 different genes, in hopes at least a few will give actionable information!

LinseighMar 20, 2023
Show threadSteve GisselbrechtFeb 22, 2023

@linseigh
I'm so sorry.

I'm in the research community, so kind of medical-adjacent, and we're working right now on a proposal for a rare disease-focused RFA. This is just to say that there *is* energy (and money!) out there to do research into how to improve things for you, but it's hard.

Show threadLinseighMar 20, 2023
@stevegis_ssg I mobilized research & resource initiatives, and ppl tried to shut my efforts down for emotional reasons, out of spite, etc. When a disease claims lives & leaves survivors with a devastating QoL, it gets a lot stickier. But also, during my career in the field, I was the only patient in the world who had this disease and was in that space, and people found it easy to exploit me, treat me like I was incompetent, etc.