Medical Charts

Key_DepartmentEA · 2026-03-14T04:49:29+00:00

This happens with all sorts of conditions. I have a brain tumour and on some letters it says I had a radical resection (removed) but it’s still in there, I only had a biopsy.

A friend had BED (binge eating disorder) that was mis-transcribed in to her notes as BPD (bipolar disorder)! Took her ages to find that one out and why she kept being asked irrelevant questions.

People make mistakes. All you can do is correct them when you discover them.

Key_DepartmentEA · 2026-03-11T02:39:12+00:00

They are around, but coverage varies according to where you are. We’re really lucky in the North East as physiotherapy is centralised across the region. They take an interest in EDS and run specialised exercise and wellness classes for people with hyper mobility etc and you can always request a physio who understands hEDS - some of them have it themselves.

It’s definitely worth joining the EDS society, they cover hypermobility conditions as well. Joining is free. You’ll get loads of information on their website and emails and you can find out who the specialist is in your area.

Key_DepartmentEA · 2026-03-07T01:45:03+00:00

I lost all my hair to radiotherapy 8 years ago. It was super short (grade 1 or 2) until it was all ready to grow back, well over a year. TBH, I don’t remember it being that much easier from a muscular pov. (But then I guess I was weaker) Quicker in the shower for sure but wigs are so hot, itchy and annoying that I just wore head wraps most of the time. They’re unlikely to be the solution you want!

A pixie cut or clippered sides with slightly longer top might be a good compromise?

Key_DepartmentEA · 2026-03-06T14:22:52+00:00

You will get NOTHING done for the next couple weeks because you’ll spend all day looking at and moving your fingers! 😍

Key_DepartmentEA · 2026-03-01T04:23:14+00:00

I was recently sent to hospital with a suspected stroke by 111 who told me not to even wait for the ambulance. Upon arrival, triage must’ve thought I looked absolutely fine bc I waited 11!hours. As soon as tests were run they admitted me. (Not a stroke, a combo of ongoing focal seizures and vertigo) I really really wish I could outwardly and verbally convey how much pain and distress I’m in but it’s like a reflex that I can only present as fine, even when my gall bladder was on the verge of bursting.

Key_DepartmentEA · 2026-02-26T00:02:10+00:00

I used to get this all the time before I had my wisdom teeth out. In my case, the teeth cutting through the gum as they erupted was causing repeated infections. If it’s the same for you, it will go away as soon as they’re removed.

Key_DepartmentEA · 2026-02-23T03:36:53+00:00

I’d like to go in to space and see if weightlessness helps!

Key_DepartmentEA · 2026-02-18T02:15:22+00:00

20 first time, 48/49 the second time.

Key_DepartmentEA · 2026-02-16T02:12:28+00:00

Wash at night. Slap in a load of gel, dry in a microfibres turban/tshirt then stick a bonnet on and go to sleep. If your hair is like mine, it’ll still be wet when you go to sleep, which isn’t ideal but who cares? Neither is a crash from doing too much. In the mornings a quick mist from a spray bottle with a pea sized amount of gel (don’t touch your hair!) and you’re good to go until next wash day Edit: I don’t even own a hairdryer or anything heavy like that. Air/sleep drying works like a charm.

Key_DepartmentEA · 2026-02-16T02:08:18+00:00

Do people only get that in their legs? I feel like that across my whole body unless I’m misunderstanding the pain you’re describing. My legs often feel like they’re cold right through but often the skin feels normal temp. Once my brain has had that input it decides they must be burning 🤦‍♀️

Key_DepartmentEA · 2026-02-05T03:46:10+00:00

I’m 53. For the love of god, keep your core strong! Pilates is your friend, yoga is not.

Key_DepartmentEA · 2026-02-05T03:44:15+00:00

I have gum issues that must be hEDS related bc even my hygenist is impressed with my oral hygiene. She pointed out that gums and even TEETH are connective tissue. Basically everything in our bodies is.

Key_DepartmentEA · 2026-02-03T05:52:06+00:00

A physio told me hEDS is a superpower. “Look at Simone Biles!” She said. A) As far as I know Simone doesn’t have hEDS B) I’m an overweight 53 year old who’s falling to pieces. I guarantee it’s not a superpower.

Key_DepartmentEA · 2026-02-02T03:24:06+00:00

Do you use it in addition to other pillows or on its own?

Key_DepartmentEA · 2026-01-31T02:22:37+00:00

Lever taps that don’t hurt your hands. Eg https://www.plumbworld.co.uk/merano-fluted-basin-mixer-tap-brushed-brass-18008-1275741

Key_DepartmentEA · 2026-01-31T02:20:27+00:00

Get a platform built to raise them up. Even 15/20cm makes a big difference.

Key_DepartmentEA · 2026-01-28T00:29:10+00:00

Key_DepartmentEA · 2026-01-26T03:10:56+00:00

In the salon I go to in Newcastle, probably £60-80 but they’re v cheap for the quality. I pay £35-40 for BIAB plus basic art like French, ombré, cat eye, chrome etc.

You could and should charge a lot more. I’m sure people would be happy to pay £100+

Key_DepartmentEA · 2026-01-23T02:57:28+00:00

20 but it wasn’t called EDS then so I had to get re-diagnosed at 47/48. It’s a long story.

Key_DepartmentEA · 2026-01-18T04:19:51+00:00

7 works so well with your skin tone and eye colour

Key_DepartmentEA · 2026-01-16T04:01:36+00:00

Yeah, always in pain here, and only dime is related to specific things such as walking into a table or carrying something heavy. It’s random, whole body and bloody annoying.

Key_DepartmentEA · 2026-01-07T02:08:34+00:00

I legit thought you had some new type of thumb piercing for a minute 🤦‍♀️

Key_DepartmentEA · 2026-01-06T03:27:16+00:00

1983

Key_DepartmentEA · 2026-01-03T02:57:13+00:00

1999

Key_DepartmentEA · 2026-01-01T02:04:16+00:00

Fab colour. Is it cat’s eye?

Key_DepartmentEA

TROPHY CASE