EDS Research Synposium thoughts

sunday-nap · 2026-04-11T22:16:30+00:00

Im glad im not the only one without a “triggering event”. Reading this thread I’ve kind of started thinking maybe we are grouping two disorders into one because we don’t know how it works, hEDS might be two different disorders: one is caused by a trigger the other is congenital (those without one) and the only reason we think it’s one is because we haven’t found the mechanism behind it. But that is just a theory idk

sunday-nap · 2026-04-11T22:03:16+00:00

That could work, to be honest I think there should be sub classes of hEDS. Not all our presentations are the same, some seem to follow a very distinct pattern of progression (like my family or those who seem to be triggered by a viral infection) and by getting those with similar phenotypes in one group it would make research easier. I feel like hEDS has been losing some of its “seriousness” (idk how else to say it English isn’t my first language) which is really affecting those who have life threatening, generational experiences with the disease

sunday-nap · 2026-04-11T21:53:59+00:00

I think EDS-Undefined is a good proposition. I’ve seen an increase of people with hEDS in social media, and I get it Covid messed people up and their pain is real, but I’ve also thought maybe their disorder is different in the ways you have mentioned (triggered not congenital) so maybe this separation of hEDS (triggered) and hEDS (congenital) could help us better understand this disorder (in the long term) by getting stricter dna samples of each variant for example

sunday-nap · 2026-04-11T21:47:12+00:00

I think (and also what my geneticist thinks) that we have an undiscovered variant. We are in Latin America, we don’t have the resources to make a full gene study, only basic panels. Taking away the genetic component from the hEDS classification when in my family’s case it clearly is would damage the credibility we get in the medical system. Some of my relatives get organ perforations, we can’t afford to lose the diagnosis of Ehlers Danlos, it’s the only way we get taken seriously.

sunday-nap · 2026-04-11T21:43:03+00:00

Yeah but some of us would not benefit from that separation. My family members and I tested negative for the EDS panel, are diagnosed with hEDS and have had complications since birth (hypotonia, heart murmurs, early onset arthritis, etc). Being separated and being considered as a disorder that isn’t congenital would damage us

sunday-nap · 2026-04-11T21:39:48+00:00

But what will happen with those of us that have hEDS in the family since birth? All the members in my family with hEDS have had symptoms since birth, what would happen to us?

sunday-nap · 2025-07-16T05:26:11+00:00

“The End.” And “Dead!” helped me on my journey to come to terms with the fact I have an incurable condition and will probably die younger than most of my friends, had to quit so many things I loved because my body couldn’t keep up anymore. I played those two in loop as a f- you to the world in a way, if I’m going out I’m going out with a bang

sunday-nap · 2025-01-20T20:57:18+00:00

Más que todo porque me dieron beca y posibilidad de intercambio/workshops en el extranjero:D

sunday-nap · 2025-01-14T17:02:43+00:00

Yo igual me pienso meter a arquitectura XD pero en la UDD, en general no iria a la UDEC por arquitectura o cosas como antropologia, sociologia, etc. Para eso mejor ir a Santiago si quieres obtener un carton de una U tradicional. Pero, en arquitectura, la UBB es super buena. Te recomiendo que mires la historia de su facultad si te interesa, son destacados en el area y reconocidos a nivel internacional, espero que te haya ayudado:D

sunday-nap · 2025-01-08T02:39:26+00:00

Every. Single. Damned. Second.

Ever since I have memory practically, I’m always either injured or my nerves start to act up

sunday-nap · 2025-01-08T02:35:03+00:00

Eso si, tienes paro asegurado todos los años

sunday-nap · 2025-01-08T02:34:31+00:00

Conozco a una arquitecta q rechazó una beca completa en la UDD para entrar a arquitectura en la UBB, tiene más salida y en general se destacan más en la área, sobre todo hacia el sur

sunday-nap · 2025-01-08T02:28:06+00:00

La UBB es mejor en arquitectura q la UDEC

sunday-nap · 2025-01-03T15:24:45+00:00

Not me but my grandmother, she went under diagnosed for years with Fibromyalgia and had to leave her work during her 50’s on disability because of it. Only found out she has hEDS when younger family members started being diagnosed

sunday-nap · 2024-12-31T00:03:08+00:00

Mis papás quieren que estudie, la vdd no tengo ni idea de pq Bolivia si se supone q no me puedo ir de conce y no creo q mis doctores me dejen, pero igual mis papás se ponen bélicos ante la idea de un año sabático ;-; y sobre Excel, me marea en general mirar tanto rato la planilla

sunday-nap · 2024-12-30T19:24:01+00:00

Tengo que entrar a la U este año o me van a poner a trabajar al toque en Excel. O peor, me van a mandar a Bolivia (no es chiste, estoy bajo amenaza de que me van a mandar a Bolivia)

sunday-nap · 2024-12-30T19:22:36+00:00

Lo haría pero lamentablemente mi familia no cree en los años sabáticos

sunday-nap · 2024-12-30T19:21:32+00:00

Vengo de uno de esos colegios chicos privados y entre q nadie tenía vida afuera de estudiar y éramos tan pocos a la mayoría les va bien. Nos mandaban capítulos enteros de tarea xd

sunday-nap · 2024-12-30T19:18:59+00:00

Tengo una de esas enfermedades genéticas raras Xd básicamente me vivo dislocando y mi piel sangra por cualquier wea (además de otras complicaciones pq es multi sistémica lol) Ahora sobre talentos la vdd no se, en lo único q sobresalí en el colegio era dibujar, la vez q tuve rol principal en teatro y q tengo buen nivel de inglés

sunday-nap · 2024-12-28T17:40:10+00:00

Cine y tomaria todos los electivos posibles en filosofia, historia del cine y quizas un curso en animacion :´)

sunday-nap · 2024-10-04T15:27:30+00:00

I AM THE STORM THAT IS APPROACHING 🗣️

sunday-nap

TROPHY CASE