AndrewUccello
Region: US
Monday 20 July 2026 16:05:26 GMT
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Mia :
Need to send this to my mom cause she also thinks I’ll grow out of it
2026-07-23 05:13:25
2
Catherine :
I never really thought it would get better but I dont pass out as much as i used to, which means its more invisible then ever before. Very sure I have EDS tho and holy hell is that kicking me down
2026-07-23 15:59:35
0
Casanova :
The research has only recently picked up because Covid triggered it in millions and millions of people 😭
2026-07-20 20:30:50
242
christinadrott :
Yeah the idea that people go into remission sounds like a scam
2026-07-23 04:55:22
1
Valkira :
I have had POTS for almost 5 decades. I have had it since early childhood.
2026-07-20 19:04:15
80
thatonebitch006 :
I’m drowning and it’s only getting worse and my doctor aren’t helping 😭😭😭😭
2026-07-22 13:55:56
3
Michelle, EdS :
I've had POTS since the early 1990s. I was only formally diagnosed about 12 years ago.
2026-07-22 22:37:17
0
ℰmma💥 :
I’ve had it since I was young but officially diagnosed at 15, now I’m 18 and can barely leave my bed😂
2026-07-22 02:51:42
1
preston :
well this is bleak 😭
2026-07-20 21:19:07
35
Katie :
The first signs of pots started for me around 12y/o now almost 20yrs later and it’s only gotten worse… this makes me feel so discouraged. However , with the influx of diagnosis after COVID- I want to hope for more momentum in research and development of treatments.
2026-07-21 04:06:09
18
marissa :
I had it from age 6 until age 23 when I had a spinal fusion for craniocervical instability secondary to hEDS. I really think it’s the brain stem.
2026-07-22 11:54:45
6
Rigan :
I wasn't even diagnosed until I was 42, after passing out and injuring myself multiple times throughout my life and being complete dismissed by doctors every. single. time.
2026-07-20 19:18:55
40
rowen :
i suggest we divvy up the one person who recovered and absorb their energy 🙋♀️
2026-07-22 00:18:10
5
𝔞𝔪𝔞𝔯𝔞𝔫𝔱𝔥𝔦𝔰 :
as someone who’s worsened significantly since developing this as a teen, I wish the community would listen & stop pushing the recovery narrative
2026-07-22 02:23:39
15
🙂 :
I wonder if they'll do a study on folks that got POTS later in life like I did after a flu virus in 2008. :(
2026-07-20 21:50:31
31
annabelle spine🇺🇸🆘 :
If I had a dollar for every Dr who told me that I would just grow out of it. 😡
2026-07-21 00:00:45
6
Gilmore & Appa :
I’ve had POTS for 18 years and it’s only gotten worse as time goes on 😭
2026-07-21 02:31:16
8
Bismuth_Moon :
I believe I've had POTS since I was at least 14 or 15. I was only diagnosed last year at 38 after YEARS of telling parents and doctors about my symptoms and concerns
2026-07-21 10:21:26
12
Archeohistorian :
I got POTS AT 35. That was 26 years ago. Long term mold/actinomycetes exposure and Epstein Barr jumped on me in 2001. He’ll ever since.
2026-07-21 07:15:42
6
Halle :
Mine is very well controlled but will flare. It's so much better tho. It's mostly external factors...how much sleep, temperature, dehydration, etc
2026-07-20 23:24:37
5
Hannah Shamallamagle :
Oh man that’s depressing
2026-07-20 21:11:01
13
thevioletv0id :
So interesting. Had one cardiologist to tell me that I could grow out of it, I got another cardiologist and he said that if you have hypermobile EDS or HSD it’s highly unlikely that it will ever go away and like stressed that it was going to be something I deal with forever
2026-07-22 05:21:33
2
JewelsJourneys :
because POTS is not treated as it should be. it is a vascular condition and should be treated a such. Sometimes the vascular issues are not as simple as just the legs. it can be in the abdomen and pelvis. but it's not checked in POTS
2026-07-22 17:16:13
4
SeeJaneRise :
I’ve had POTS for almost 9 years. At around the four year mark I did see some improvement (like my Dr at Johns Hopkins mentioned she sees a lot) but in the last year I’ve slowly gotten worse again. I don’t think mine will ever go away, just cycle through short or much longer intervals
2026-07-21 03:58:02
2
Jessie Sweigart Patt :
I’ve had POTs since I was 14 and I as told all my symptoms were normal until this past year 🙄
2026-07-22 16:51:54
4
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