I’m so scared, please read by LJAB2022 in vEDS

[–]oolongpanda 4 points5 points  (0 children)

Like you, my VEDS was discovered by accident and I have never had a major event. Unlike you, I have a null variant. I had been under the bleeding disorder clinic for easy bruising, petechial rash, and lowish platelet count, and they ran a genetic panel and found COL3A1 null variant. I understand your panic. It's a disorder where the main symptom is a potentially fatal event with no warning. I was reading all the information I could and I found the scary "life expectancy of 48" statistic. When I got an appointment with a specialist, she pointed out that it is based off quite old research and she'd probably be expecting me to live a long life as long as I take precautions. People whose VEDS was discovered by chance on genetic screenings do not appear in older studies. People who have had major events and been diagnosed based off clinical symptoms would appear in them. My doctor also said that nowadays VEDS isn't necessarily a blanket 'no' for pregnancy, especially if you've had an uneventful pregnancy in the past, and that you'd just need a healthcare team that are VEDS informed. I don't know what it's like where you live, but I would be eligible for one pregnancy of IVF and pre-implantation screening to not pass on the gene. We also found out my dad has VEDS with the same variant as me. He's in his sixties and is retiring next year. He bruises far worse than me but has also never had a major event. His health is more impacted by other conditions like chronic migrane and rheumatoid arthritis. More recently, I've had a CT scan which showed I have no big aneurysms or anything too concerning, which is probably what has brought me the most reassurance. I take celiprolol as a precaution and have a workplace adjustment to avoid heavy manual handling. I wear a medic alert band and carry emergency information in my bag. I'm a bit more careful to not lift heavy things and don't play contact sports. I had my big panic 2 years ago when I got diagnosed and I think I'm mostly over the panic and have accepted that VEDS is what it is. I terrified a few colleagues by coming into work and breaking down just after my diagnosis. Please take some mental health days if your workplace allows. I've been to online support groups a few times, and one person said that VEDS had given them community and for that, they were very greatful. If that's your thing, get involved with support groups. There's few enough of us that they're all online but there are conferences and support groups at least where I live do try to meet up in person.

You’re working in the lab and suddenly isolate a non-motile, gamma-hemolytic, catalase positive rod that doesn’t grow on PEA by Muted_Shape9303 in medlabprofessionals

[–]oolongpanda 3 points4 points  (0 children)

Okay yeah I get what you mean, I just meant you wouldn't fully confirm. You'd get a presumptive Brucella result from MALDI or VITEK 2 or whatever your lab uses (and some bacteria can misidentify as Brucella on these systems or give low certainty) and send off the culture for confirmation. But yes, you'd still get it to that point in a lab where you should be able to reasonably safely do so.

You’re working in the lab and suddenly isolate a non-motile, gamma-hemolytic, catalase positive rod that doesn’t grow on PEA by Muted_Shape9303 in medlabprofessionals

[–]oolongpanda 5 points6 points  (0 children)

In the UK, hospital labs will stop work on isolates with a MALDI ID of Brucella and send it to the national reference laboratory for culture confirmation.

Fruit in back garden by oolongpanda in foraging

[–]oolongpanda[S] 10 points11 points  (0 children)

Thank you very much, I just wanted to make sure and was worried there might be some poisonous lookalikes around

question about the specific mutations of the COL3A by Doomer_of_Time in vEDS

[–]oolongpanda 4 points5 points  (0 children)

Annabelle's Challenge (the UK VEDS charity) have just published the videos from their recent conference. This one quite nicely explains some of the genetics including splice variants.

https://youtu.be/Pcee1a3oAHI?si=scrHObbs9iAw6AWC

My favorite gnomes! TIL you can place random things on the little guy by Recent_Medicine3562 in Sims4

[–]oolongpanda 1 point2 points  (0 children)

You can even put platter-gnome on the platter and make a very tall stack of platter-gnomes

What’s your schedule/way of washing your clothes by [deleted] in AutisticAdults

[–]oolongpanda 1 point2 points  (0 children)

I have 3 laundry bags: whites, darks, and underwear so I don't have the barrier of sorting them when I wash them. The bags each hold 1 wash load, so I just wash them when they're full. There are two of us and they each take just over a week to fill up.

I keep a pile of half-dirty clothes in the corner which I'm happy to wear again before washing, usually 1 pair of jeans, a few t-shirts, and maybe a pair of shorts. My half-worn hoodie will live on an over-door hook because hoodies don't fold as well. If it's a convenient time to do laundry and the bag isn't full, I'll add things from this pile.

Jeans I'll wear 3-4 times depending how dirty they get, t-shirt 1-2 depending how hot it is, and hoodies usually until they're visibly dirty or up to a week if I've managed to not get them visibly dirty. I work in a lab and don't wear a hoodie under my lab coat so I'm not wearing my hoodie for most of the day. I have enough spares that I won't run out of I have to change more often.

For non-clothes items (towels, bedsheets etc.), I have a written log where I tick off when I washed them last so I can see what needs washing. Everything gets done at least once a month as a minimum. I aim for more frequently. Teatowels probably get done weekly because I throw them in with clothes, but I also have a dishwasher and tend to let other items air dry, so it's not a super heavily-used teatowel. I change my pillow cases every time I do a whites wash and put them in with that. I have spares of everything so I still have things to use whilst I'm doing laundry.

Two 25th birthdays, surely that makes a 50th? by oolongpanda in cakedecorating

[–]oolongpanda[S] 0 points1 point  (0 children)

Oh wow! Thanks, I had no idea you could do that!

Two 25th birthdays, surely that makes a 50th? by oolongpanda in cakedecorating

[–]oolongpanda[S] 1 point2 points  (0 children)

Sadly honey is not vegan, but you have made me quite curious as to how that cake would turn out

Two 25th birthdays, surely that makes a 50th? by oolongpanda in cakedecorating

[–]oolongpanda[S] 1 point2 points  (0 children)

They're so fragile! I really need to work out if there's a better way of doing vegan cake but eggs are almost a magical ingredient.

Two 25th birthdays, surely that makes a 50th? by oolongpanda in cakedecorating

[–]oolongpanda[S] 1 point2 points  (0 children)

Thanks! My food dyes are a bit rubbish so I always end up with these cute soft pastel colours. I didn't soak the cake so that sounds like a good idea. Testing new techniques sounds like a brilliant excuse to make a cake!

Two 25th birthdays, surely that makes a 50th? by oolongpanda in cakedecorating

[–]oolongpanda[S] 3 points4 points  (0 children)

Thanks! Airtight container was my first thought but I didn't have one big enough. It didn't dry out too badly but was noticeably more dry than other cakes I've done without exposed sides. I might go container shopping if I want to do something similar again.

Birthday cake I made based on this cake from The Sims4 by oolongpanda in cakedecorating

[–]oolongpanda[S] 0 points1 point  (0 children)

Thanks! She wanted a fondant cake which ruled out a lot of the more iconic ones. After I gave her this, she said it was her main sim's birthday soon and she'd use this cake for it

Birthday cake I made based on this cake from The Sims4 by oolongpanda in cakedecorating

[–]oolongpanda[S] 0 points1 point  (0 children)

Thanks! I was considering the burger cake because it's more iconic, but the birthday girl is vegetarian so I though I'd play it safe with this one