YES lol I get the diff spellings mixed up. Anyway yeah marfan’s and EDS aren’t necessarily related tho i was tested for the former bc of how much my family LOOKED like we had it, and vEDS advocacy is mostly done thru the marfan foundation bc afaict of how neglectful EDS society was to non hEDS types
September 29, 2026 at 5:12 PM
YES lol I get the diff spellings mixed up. Anyway yeah marfan’s and EDS aren’t necessarily related tho i was tested for the former bc of how much my family LOOKED like we had it, and vEDS advocacy is mostly done thru the marfan foundation bc afaict of how neglectful EDS society was to non hEDS types
📣 New Podcast! "Loss, Purpose, Legacy: Rosemarie Nania and the Mission Behind BELOvEDS" on @Spreaker #aorticdissection #athlete #athletemindset #belovedsfoundation #beyondthefinishline #collegeradio #ehlersdanlossyndrome #eliteathlete #elitemindset #familylegacy #geneticdisorder #grieftopurpose
Loss, Purpose, Legacy: Rosemarie Nania and the Mission Behind BELOvEDS
In this episode of Life Beyond The Finish Line, Orlandina sits with Rosemarie Nania as she shares how loss became advocacy, purpose, and legacy
After losing her brother Angelo to complications related to vascular Ehlers-Danlos syndrome (vEDS), Rosemarie Nania turned unimaginable grief into purpose.
As Founder and President of BELOvEDS, A Nania Foundation, she now works to raise awareness, support research, and help families impacted by this rare genetic condition. However, what her family discovered after Angelo’s death would change everything.
🏁 Success is just the beginning.
www.spreaker.com
September 27, 2026 at 11:30 AM
📣 New Podcast! "Loss, Purpose, Legacy: Rosemarie Nania and the Mission Behind BELOvEDS" on @Spreaker #aorticdissection #athlete #athletemindset #belovedsfoundation #beyondthefinishline #collegeradio #ehlersdanlossyndrome #eliteathlete #elitemindset #familylegacy #geneticdisorder #grieftopurpose
Having fun without vEDS. Went faster in the pool and now I’m having A SECOND CUP OF COFFEE (well half decaf and half proper). This IS EXCITING.
September 23, 2026 at 12:11 PM
Having fun without vEDS. Went faster in the pool and now I’m having A SECOND CUP OF COFFEE (well half decaf and half proper). This IS EXCITING.
Wait over. 15 months after going to the GP and my life flashing before my eyes, I’ve finally found out I don’t have vEDS. It’s most definitely hypermobile EDS.
September 22, 2026 at 2:44 PM
Wait over. 15 months after going to the GP and my life flashing before my eyes, I’ve finally found out I don’t have vEDS. It’s most definitely hypermobile EDS.
It also isn’t a great atmosphere for someone trying to keep their blood pressure on an even keel waiting for a vEDS diagnosis or even just with hEDS.
September 19, 2026 at 11:12 AM
It also isn’t a great atmosphere for someone trying to keep their blood pressure on an even keel waiting for a vEDS diagnosis or even just with hEDS.
After a lot of reading about the vascular type of EDS I realised this can be a symptom of it. There’s no sign of surgery for it as with EDS surgery has to be essential and necessary. If I get diagnosed with vEDS this will be deemed trivial and not worth the massive risk of the operating table.
September 16, 2026 at 7:33 AM
After a lot of reading about the vascular type of EDS I realised this can be a symptom of it. There’s no sign of surgery for it as with EDS surgery has to be essential and necessary. If I get diagnosed with vEDS this will be deemed trivial and not worth the massive risk of the operating table.
I tend to think it's probably not the case. Nothing is ever fully disproved but most of the things that people with vEDS "usually" have are not true of me. The main reason the worry sticks with me is my blood pressure is very high and my heart valves are a bit fucky
September 16, 2026 at 5:23 AM
I tend to think it's probably not the case. Nothing is ever fully disproved but most of the things that people with vEDS "usually" have are not true of me. The main reason the worry sticks with me is my blood pressure is very high and my heart valves are a bit fucky
Vista's new Economic Development Strategy is set to transform the city's landscape by prioritizing small businesses and workforce development over the next three years!
Click to read more!
#VistaSanDiegoCounty #CA #TourismStrategy #CitizenPortal #VistaEconomicDevelopment #SmallBusinessSupport
Click to read more!
#VistaSanDiegoCounty #CA #TourismStrategy #CitizenPortal #VistaEconomicDevelopment #SmallBusinessSupport
Vista council receives three‑year economic development strategy; council moves to adopt with minor edits
City staff presented a stakeholder‑driven Vista Economic Development Strategy (VEDS) for 2026–2029. Council members praised the plan’s focus on small businesses, workforce pathways and tourism; staff will return with minor edits and an annual implementation update.
citizenportal.ai
September 11, 2026 at 3:22 PM
Vista's new Economic Development Strategy is set to transform the city's landscape by prioritizing small businesses and workforce development over the next three years!
Click to read more!
#VistaSanDiegoCounty #CA #TourismStrategy #CitizenPortal #VistaEconomicDevelopment #SmallBusinessSupport
Click to read more!
#VistaSanDiegoCounty #CA #TourismStrategy #CitizenPortal #VistaEconomicDevelopment #SmallBusinessSupport
So my kiddo was diagnosed with Vascular Ehlers Danlos and i have Hypermobile type. I feel for him and kids like him there needs more awareness so im posting awareness vids to platforms in hopes to help
youtube.com/shorts/izIHc... #ehlersdanlos #veds #heds #vascularehlersdanlos #awarenessmatters
youtube.com/shorts/izIHc... #ehlersdanlos #veds #heds #vascularehlersdanlos #awarenessmatters
Ehlers Danlos Awareness Make the invisible visible!
YouTube video by Magical Unicorns Creations
youtube.com
September 10, 2026 at 4:26 PM
So my kiddo was diagnosed with Vascular Ehlers Danlos and i have Hypermobile type. I feel for him and kids like him there needs more awareness so im posting awareness vids to platforms in hopes to help
youtube.com/shorts/izIHc... #ehlersdanlos #veds #heds #vascularehlersdanlos #awarenessmatters
youtube.com/shorts/izIHc... #ehlersdanlos #veds #heds #vascularehlersdanlos #awarenessmatters
That’ll affect me and mine. We’re part of a co-op between our town and one in Canada. Elec powers my well and if I don’t have water, I die. I’ve Sjögren’s Syndrome. Mix that with vEDS and I’ll die. Tyvm.
September 10, 2026 at 9:08 AM
That’ll affect me and mine. We’re part of a co-op between our town and one in Canada. Elec powers my well and if I don’t have water, I die. I’ve Sjögren’s Syndrome. Mix that with vEDS and I’ll die. Tyvm.
It’s halfway through diagnosis (or not) wait time for vEDS. Hopefully only eight weeks to go, so I treated myself (and also someone was rude to me but I totally understand why).
September 6, 2026 at 12:05 PM
It’s halfway through diagnosis (or not) wait time for vEDS. Hopefully only eight weeks to go, so I treated myself (and also someone was rude to me but I totally understand why).
Another reason why I am getting tested for vEDS.
September 1, 2026 at 3:04 PM
Another reason why I am getting tested for vEDS.
#GroupeDeParole 💬 | En partenariat avec l'association VEDS France, un groupe de parole est organisé portant sur : « Comment se sentir légitime face à cette maladie invisible ».
📅 Mardi 15 septembre
⏰ 18h30
📍 Visioconférence
Inscription gratuite et obligatoire : docs.google.com/forms/d/e/1F...
📅 Mardi 15 septembre
⏰ 18h30
📍 Visioconférence
Inscription gratuite et obligatoire : docs.google.com/forms/d/e/1F...
September 1, 2026 at 9:15 AM
#GroupeDeParole 💬 | En partenariat avec l'association VEDS France, un groupe de parole est organisé portant sur : « Comment se sentir légitime face à cette maladie invisible ».
📅 Mardi 15 septembre
⏰ 18h30
📍 Visioconférence
Inscription gratuite et obligatoire : docs.google.com/forms/d/e/1F...
📅 Mardi 15 septembre
⏰ 18h30
📍 Visioconférence
Inscription gratuite et obligatoire : docs.google.com/forms/d/e/1F...
Ellie is my third service dog and, at ~10 lunar months. She’s doing very well. My last service dog, K7haal, was retired 7/2025 due to cataracts. My first, Fenway, passed away in 2018. I’ve Lupus, cEDS and vEDS, Complex Migraines, Sjögren’s, and Fibromyalgia, and IBD. So, I get it. 😉. Here’s Ellie:
August 30, 2026 at 4:54 PM
Ellie is my third service dog and, at ~10 lunar months. She’s doing very well. My last service dog, K7haal, was retired 7/2025 due to cataracts. My first, Fenway, passed away in 2018. I’ve Lupus, cEDS and vEDS, Complex Migraines, Sjögren’s, and Fibromyalgia, and IBD. So, I get it. 😉. Here’s Ellie:
yeah like even Blood is a connective tissue 😭
i dont blame them for thinking hEDS is the least impactful one because vEDS is a decreased lifespan!! but i think a large part of that is that the emphasis is on a symptom that isnt encompassing the whole diagnostic criteria
i dont blame them for thinking hEDS is the least impactful one because vEDS is a decreased lifespan!! but i think a large part of that is that the emphasis is on a symptom that isnt encompassing the whole diagnostic criteria
August 30, 2026 at 2:29 PM
yeah like even Blood is a connective tissue 😭
i dont blame them for thinking hEDS is the least impactful one because vEDS is a decreased lifespan!! but i think a large part of that is that the emphasis is on a symptom that isnt encompassing the whole diagnostic criteria
i dont blame them for thinking hEDS is the least impactful one because vEDS is a decreased lifespan!! but i think a large part of that is that the emphasis is on a symptom that isnt encompassing the whole diagnostic criteria
Really, really hoping I can talk my doctors into letting me have even a low dose. (Old doctor was skittish due to my heart condition, but I have new, better doctors now, including a vEDS cardiologist.)
August 29, 2026 at 1:38 PM
Really, really hoping I can talk my doctors into letting me have even a low dose. (Old doctor was skittish due to my heart condition, but I have new, better doctors now, including a vEDS cardiologist.)
yo: las últimas pruebas que me han hecho tengo todo bien, las arterias y todo bien está todo perfecto.
yo todo el día: me han diagnosticado mal y tengo veds y me voy a quedar frita un día sin darme cuenta
ser hipocondríaca es un viaje
yo todo el día: me han diagnosticado mal y tengo veds y me voy a quedar frita un día sin darme cuenta
ser hipocondríaca es un viaje
August 24, 2026 at 5:33 PM
yo: las últimas pruebas que me han hecho tengo todo bien, las arterias y todo bien está todo perfecto.
yo todo el día: me han diagnosticado mal y tengo veds y me voy a quedar frita un día sin darme cuenta
ser hipocondríaca es un viaje
yo todo el día: me han diagnosticado mal y tengo veds y me voy a quedar frita un día sin darme cuenta
ser hipocondríaca es un viaje
Anyone else heard of, or used, these VEDs? Sound like a good thing but I was completely unaware of them!
youtube.com/shorts/O4San...
youtube.com/shorts/O4San...
How virtual EDs are giving ambos more time to attend serious calls
YouTube video by The National Account
youtube.com
August 21, 2026 at 10:02 PM
Anyone else heard of, or used, these VEDs? Sound like a good thing but I was completely unaware of them!
youtube.com/shorts/O4San...
youtube.com/shorts/O4San...
Trying a day out with my rucksack because I need to get used to a bigger bag if I get the vEDS diagnosis. I bought it thinking I might have Addison’s and to carry my laptop but I don’t need it for those reasons now. It will be useful in spring when I don’t know what to wear.
August 20, 2026 at 11:57 AM
Trying a day out with my rucksack because I need to get used to a bigger bag if I get the vEDS diagnosis. I bought it thinking I might have Addison’s and to carry my laptop but I don’t need it for those reasons now. It will be useful in spring when I don’t know what to wear.
Adam, if not for THC, I’d of killed myself. Drs had me on Fentanyl, first, then Butrans. Those are nasty opioids. I’d a severe allergic reaction
to Butrans. Swore off any/all opioids. MMJ has, quite literally, saved my life. My drs are in full agreement. I’ve cEDS, vEDS, Sjõgren’s, Fibromyalgia… 1/2
to Butrans. Swore off any/all opioids. MMJ has, quite literally, saved my life. My drs are in full agreement. I’ve cEDS, vEDS, Sjõgren’s, Fibromyalgia… 1/2
August 16, 2026 at 9:27 PM
Adam, if not for THC, I’d of killed myself. Drs had me on Fentanyl, first, then Butrans. Those are nasty opioids. I’d a severe allergic reaction
to Butrans. Swore off any/all opioids. MMJ has, quite literally, saved my life. My drs are in full agreement. I’ve cEDS, vEDS, Sjõgren’s, Fibromyalgia… 1/2
to Butrans. Swore off any/all opioids. MMJ has, quite literally, saved my life. My drs are in full agreement. I’ve cEDS, vEDS, Sjõgren’s, Fibromyalgia… 1/2
In case anyone is wondering when I’m going to get my vEDS blood test results, the current estimate is between four and six months. This puts it between mid November and mid January. I am happy with this as Christmas distracts me from most things.
August 4, 2026 at 10:41 PM
In case anyone is wondering when I’m going to get my vEDS blood test results, the current estimate is between four and six months. This puts it between mid November and mid January. I am happy with this as Christmas distracts me from most things.
I haven’t been rowing since early June and my strained back. I did try to carry on but I was getting panic attacks because you’re not supposed to row with vEDS. So now I cycle before I swim. My back feels great at the moment.
August 4, 2026 at 9:55 AM
I haven’t been rowing since early June and my strained back. I did try to carry on but I was getting panic attacks because you’re not supposed to row with vEDS. So now I cycle before I swim. My back feels great at the moment.
A reminder that private isn’t always better. This was a result of queries about a private vEDS test. As you can see the NHS hasn’t beaten the timescale, but it wasn’t bad. And I saved some cash too.
August 4, 2026 at 9:24 AM
A reminder that private isn’t always better. This was a result of queries about a private vEDS test. As you can see the NHS hasn’t beaten the timescale, but it wasn’t bad. And I saved some cash too.
#EhlersDanlosSyndrome: Easily bruise + skin that easily tears/puncture caused by fragile dermal capillaries & weak connective tissue surrounding blood vessels. Folks with #EDS are forever covered in bruises and skin injuries. 🤪
(Dont mind the stubble 🫣) linktr.ee/thezebraalliance
#hEDS #vEDS #cEDS
(Dont mind the stubble 🫣) linktr.ee/thezebraalliance
#hEDS #vEDS #cEDS
August 1, 2026 at 4:54 PM
#EhlersDanlosSyndrome: Easily bruise + skin that easily tears/puncture caused by fragile dermal capillaries & weak connective tissue surrounding blood vessels. Folks with #EDS are forever covered in bruises and skin injuries. 🤪
(Dont mind the stubble 🫣) linktr.ee/thezebraalliance
#hEDS #vEDS #cEDS
(Dont mind the stubble 🫣) linktr.ee/thezebraalliance
#hEDS #vEDS #cEDS
Ah yes, EDS will do it. I lost a comrade in a chronic illness community to vEDS a while back :(
July 31, 2026 at 9:15 PM
Ah yes, EDS will do it. I lost a comrade in a chronic illness community to vEDS a while back :(