Author Topic: Rare Diseases Day 28 Feb  (Read 707 times)

ditchdwellers

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Rare Diseases Day 28 Feb
« on: 27 Feb 2021 02:09PM »
Tomorrow is Rare Diseases Day. 

I celebrate it each year with an enormous box of chocolates and usually invite the neighbours round for tea and cake. I have more than a few rare diseases, and it flummoxes the hell out of people that I hold a tea party to celebrate.  :f_laugh: Obviously this year things are a little different, so tomorrow afternoon, I would like to invite you all to join me in this thread, where some refreshments will be served and we'll have a bit of a knees up, metaphorically speaking, as my knees aren't going anywhere! 

Tea  :f_tea:
Cake  :cake:
Biccies 
More cake  :cake:
Choccies  :present:
If you want coffee then you'll have to bring your own. Can't stand the stuff.

I thought we could gather about 2pm. If I'm not here, please help yourselves as I'm probably asleep! 

If you would like to find out more about Rare Diseases Day please follow the link. You do not need to have a rare disease or anything wrong with you at all to come along to the tea party. Just don't scoff all the choccies. 
https://www.rarediseaseday.org/

Sunshine Meadows

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Re: Rare Diseases Day 28 Feb
« Reply #1 on: 28 Feb 2021 08:30AM »
:f_biggrin: I be back at 2pm

ditchdwellers

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Re: Rare Diseases Day 28 Feb
« Reply #2 on: 28 Feb 2021 02:02PM »
Afternoon all!
The tea is brewing and I have a Colin the Caterpillar cake ready for you. There's a victoria sponge and a lemon drizzle cake for those who prefer.  :cake: :cake:
Please help yourselves. 

I'm afraid that I've already eaten most of the Thornton's but there's still an untouched box of Lindt luxury selection!. Yum!  :f_smiley:

Anyway,  how are your days going? It's another lovely sunny day here......

Sunshine Meadows

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Re: Rare Diseases Day 28 Feb
« Reply #3 on: 28 Feb 2021 02:03PM »
I brought Kendo and mugs where is the kettle?

I took a look at the link  :f_smiley: it's great too pick last day in February what with leap years

Sunshine Meadows

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Re: Rare Diseases Day 28 Feb
« Reply #4 on: 28 Feb 2021 02:09PM »
Blooming tablet autocorrect I'm on my phone now I meant  Kenco I was in the coffee.

I need strawberry creams to be had?

I'm in the garden it's sunny here in the Midlands the dogs on the table watching the birds in the willow tree what are you up to?

Sunshine Meadows

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Re: Rare Diseases Day 28 Feb
« Reply #5 on: 28 Feb 2021 02:11PM »
In this age of algorithms and technology predicting as much as diagnosing what is wrong with us I wonder if more rare diseases are going to be missed because the programmers didn't think to add that to the algorithm.
« Last Edit: 28 Feb 2021 02:18PM by Sunshine Meadows »

ditchdwellers

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Re: Rare Diseases Day 28 Feb
« Reply #6 on: 28 Feb 2021 02:12PM »
Mr DD is on general support duty this afternoon, in between fixing the shed roof, so I shall summon him to attend to your kettle needs, Sunshine  :f_laugh:

Yes, the last day of Feb is easy to remember!

Sunshine Meadows

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Re: Rare Diseases Day 28 Feb
« Reply #7 on: 28 Feb 2021 02:23PM »
Thank you and I now have a nice dark cup of Kenco coffee with one sugar to enjoy and keep me warm. Actually I just put a fleece it's turquoise too match the weather

Nice chocolates, now where are the mini  Cheddars.
Haha I'm using voice to text and it keeps misunderstanding my northern accent.

ditchdwellers

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Re: Rare Diseases Day 28 Feb
« Reply #8 on: 28 Feb 2021 02:26PM »
Oh yes,  strawberries and cream, plus scones with jam and clotted cream for later. No mini cheddars I'm afraid. Only twiglets. 

Blimey, I never realised how demanding these visitors would be  :f_laugh:

I'm not able physically able to do much at the moment as my conditions are not quite controlled yet however I'm getting there and I'm in a much better situation than I was a couple of years ago. 
I sit on our lovely comfy sofa with the light pouring in through the large bay window and the view from the opposite window is over the garden and our bird feeders. My carer fills them for me and I get so much entertainment from watching them.

Sunshine Meadows

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Re: Rare Diseases Day 28 Feb
« Reply #9 on: 28 Feb 2021 02:33PM »
I meant chocolates but scones with strawberries and cream yes please.

did it take a long time to get your rare disease diagnosis sorry I don't know exactly what it is or if you said about it? I can be such a bumble head. for me getting a diagnosis made all the difference because it can help people understand that it's not just about aches and pains or not being able to walk one day or being out of contact for a while. You can say I hope this and leave it open to questions or not I guess Google helps too because it means friends and family can look things up. Then again it might be that makes things iffy or I don't know maybe I'm digging a hole in the ground do you have any trees that need planting.
« Last Edit: 28 Feb 2021 02:41PM by Sunshine Meadows »

Sunshine Meadows

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Re: Rare Diseases Day 28 Feb
« Reply #10 on: 28 Feb 2021 02:34PM »
I will say the garden I have my mask but if I put it on you'll be able to see me grinning at how comfortable you look.

Sunshine Meadows

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Re: Rare Diseases Day 28 Feb
« Reply #11 on: 28 Feb 2021 02:38PM »
:see_attachment: Annie fell asleep on Mr Sunshines lap.

ditchdwellers

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Re: Rare Diseases Day 28 Feb
« Reply #12 on: 28 Feb 2021 02:46PM »
The algorithm idea to diagnose diseases is an interesting one , Sunshine. 

In 2017 a Toolkit for the diagnosis of the different types of Ehlers Danlos Syndrome was released for medics. Based on the new criteria in the Toolkit, many of us with solid diagnoses from eminent rheumatologists would no longer qualify for a diagnosis under the new terms. So despite being diagnosed 20 years before hand my diagnosis would have probably been downgraded to a lesser condition which it obviously isn't. 
Fast forward to today, and the the Toolkit is getting removed and the whole system of diagnosis reviewed. Again. 

Diagnosis of rare and complex conditions can often take many years, and unless they have a genetic marker that can be tested for and identified, are very difficult to correctly confirm.

Sorry, I'm a one finger typist so it takes me ages to reply!

Sunshine Meadows

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Re: Rare Diseases Day 28 Feb
« Reply #13 on: 28 Feb 2021 02:54PM »
Having a solid diagnosis then being re diagnosed Make me think of how people who find out their parents aren't their real parents must feel. I mean and the same way that knowing our parents gives us identity knowing our diagnosis gives us identity and having that changed at best causes a big jolt to the system and at worst well it doesn't take a lot of imagination for that. So many of us rely on the diagnosis we have to get the benefits we need to keep the roofs over our heads.

This caterpillar cake is good I'm not sure I've ever had one before.

Sunshine Meadows

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Re: Rare Diseases Day 28 Feb
« Reply #14 on: 28 Feb 2021 02:59PM »
Don't worry about one finger typing 
 Also the sunny weather voice to text and good company is making me talkative  :f_smiley: