Essie 
Considering the surgery for GERD for myself. Does anyone have any experience with this surgery if you have EDS? I have awful GERD and I'm sure it's from a weak valve. It's definitely going to be lifelong and I already daily medication plus antacids. I already have my bed raised, wait hours before laying down etc. There's nothing left for me except surgery.
FinchFor those who are interested in this area, I can recommend this talk by Dr James Kustow, a London-based psychiatrist with a special interest in ADHD.
Very briefly, he suggests that there's often a link between ADHD and hypermobility/hEDS with ADHD traits being caused by a lack of blood reaching the brain as a result of chronic orthostatic hypotension.
He postulates that the efficacy of ADHD drugs is actually attributable to their side effect of increasing blood pressure.
His good news message is that simple steps such as keeping one's fluid and salt intake high and wearing compression stockings (aka travel socks) can help reduce ADHD symptoms.
#ADHD
#Hypermobility
#hEDS
#EhlerDanlos
Watch "Living with ADHD, EDS, and HSD - Dr. James Kustow" on YouTube
https://youtu.be/zhRnEiXU0Uk
Living with ADHD, EDS, and HSD - Dr. James Kustow
Folate-Dependent Hypermobility Syndrome: A New Diagnosis - The Fascia Institute
Jacques Courseault, MD, CAQSM, FAAPMR August 26, 2022 - The area of hypermobility and Ehlers-Danlos research is gaining more traction with the recognition of peculiar clinically presenting patterns in flexible patients. Because of the thorough evaluation performed at the Tulane Hypermobility and Ehlers-Danlos Clinic, we noticed a trend of high folate levels during the screening. To
Somosdisca 
Cada 15 de mayo se conmemora el día mundial del Síndrome de Ehlers-Danlos, con la finalidad de visibilizar esta enfermedad rara que afecta a 255 millones de personas en el mundo.
https://somosdisca.es/dia-mundial-del-sindrome-de-ehlers-danlos-2023/
#ehlersdanlossyndrome #EhlerDanlos #enfermedadrara #ehlerdanlosawareness #EhlerDanlosday #enfermedadesraras #Salud #discapacidad #discapacidadinvisible #disca #visibilidad #cuidados #prevención #disability #gentetitanica #somosdisca
I've been reading a lot about hypermobility disorder spectrum/hEDS recently, and I've been struck at the similarities between how it's dealt with and so-called "autism spectrum disorder" (or autism to you and me).
The diagnostic criteria for both is under the control of a select group of US physicians who endlessly ruminate about the minutiae of diagnosis often using poor science and ignoring some common presentations because it's easier that way. I suspect the most powerful influencers in this process are US health insurers - they get to lay down often arbitrary rules governed by their financial self-interest rather than medical science which "sufferers" around the world are then stuck with.
Most doctors then apply these dogmatic criteria without much scientific understanding of the actual mechanisms involved or insight into how "sufferers" feel.
And these doctors and numerous well-funded charities make £££s/$$$s without actually providing much in the way of real support to the people they're meant to be helping.
The *best* one can hope to get is, "Here's your diagnosis, here's the leaflet, now goodbye".
MojosueThink I've nearly put the final pieces of the jigsaw together. Autistic reaction to being hypermobile would explain pretty much everything. I know there's links between ADHD and Hypermobility.. Is it similar with Autism? Any crossover more than typical population. Is autism adhd a secondary result of connective tissue disorder?
#autism
#hypermobility
#adhd
#NeurodivergentGreatAunt
#EhlerDanlos
#connectivetissuedisorder
NemosyneI'm currently an (unpublished, for now) #author. I like to write #horror with a historical twist. But school comes first!
Lastly, having a #disability , community is very important to me. I'm a #cancer survivor with #eds , #ehlerdanlos , #fibromyalgia , #adhd , #anxiety, #depression, and cancer-related #ptsd . I do my best to be an advocate for both the #mentalhealth and #physicaldisability communities.
adiccionada 
-Lectora profesional. 📚
-Le hago a la gestión cultural. 🤓
-Curadora de libros y películas📖🎥
-90% de probabilidades de llorar en los conciertos de música clásica🎻
-La ciencia afirma tengo Ehler-Danlos.🧬
-Vivir con dolor es mi deporte extremo💊
-Mexa de provincia🇲🇽
-Trabajo con mi voz🎤
-Últimamente buscando chamba también de QA Tester que es algo que he desarrollado los últimos dos años👩🏻💻
-Dog person.🐶
-Fan de los Platívolos🍪