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Vasculitis UK
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On a more morbid note... Lol

Hi folks, just asking your opinions... I've been thinking about this for some time now and have decided that when I die, I would like to leave my body to the medical research of vasculitis and also want to leave my entire estate to this end too.

How do I go about this?

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Dear Suzycat,

I think that I might, start with, contacting John, or Susan, in the first instance. Alternatively you could, I suppose, talk to your Doctors/ consultants or even your GP. Just a further thought...have you 'got' a friendly/ approachable Solicitor, that you know? Maybe the Citizens Advice Bureaux?

Sorry but, I AM guessing a bit here. I'd still try John, or Susan, in the first instance though- if nothing else they, might know, who to ask.

Lastly, and most importantly, WHAT A WONDERFUL GESTURE Suzycat! I, really do, hope that you can find a way, to do this. My Will, that I do need to Update rather, only leaves Money to the National Kidney Foundation, Headway- The Brain Injury Charity and Cancer Research, along with my Family and so on. (I am a Kidney Patient and had a Kidney Transplant, in July 2013, so you see my reasoning.)

All, that remains, is to Thank You, very much, once again and wish you a Happy New Year 2019.

Warmest Regards

AndrewT

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Awww... Bless you Andrew and my best wishes to you too.

I have 'logged' your thoughts into my 'pred' brain lol.

I havnt made a will yet, and think that I should as I am 60 next year. I am definitely going to do this, its not a whim. I'll start with an email to John or Susan and take it from there.

Thanks again! 🐱

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We have more 'In Common', than we thought Suzycat….I'm Fifty-eight next month. As I said before, Please DO have a Happy New Year.

Kindest Wishes

AndrewT

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Hi Suzycat

What a brilliant idea. I would also be interested in finding out about donating my brain/body for research into vasculitis. I have cerebral vasculitis. If you find anything out, do please let me know. I’m just 59 and have been talking about rewriting my will so would happily put something in there.

Lorraine

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Hi Lorraine... I'll post on here when I sort everything out... Or you cud 'follow' me.. Im hoping others might follow and donate... This could set a trend! 🐱

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I hadn't thought about Donating my, Very Badly Damaged BRAIN-I'm NOT joking here- to Science. I used to work, in Laboratories after all. I'll ask about that, thank you.

Warmest wishes

AndrewT

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Hi Suzycat,

This is a big decision and I think it is wonderful that you are choosing to do this.

I was once involved with a someone who had decided to do this upon their death and I remember that they contacted their local university medical centre and got the details of the anatomy centre.

I don't think they actually accept a body just to research one certain condition though, although I am not certain about this as it was over 10 years ago. Also, I do remember that they were quite fussy about who they would or wouldn't accept which surprised me.

Either way, I wish you the very best of luck with this and this, it is a very remarkable thing to do.

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Hi Happy tulip, thanks for the heads up lol... They can take me or leave me lol, but I think I'll see my rheumatologist as he is always saying that he hasn't got answers at times, due to research constraints... Surely they would jump at the chance of a nice juicy aorta to look at.. Hahaha... 🐱

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I'm following this thread so please let us know how you get on! X

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I wonder if on of the Administrators could advise us here Suzycat? Perhaps John, or Sue, would you be prepared to approach them? (I'm Always contacting John/Sue myself, so maybe 'Someone Else', for a change?)

Do you remember Frazer, from Dads Army- played by, the wonderful, Hugh Laurie? His story about 'The Old Empty Barn'? He kept this 'Story' going, for five minutes or more, before announcing that 'There was NOTHING in it!!!'. What pure genius, never be the like again. Rather like, the great, Spike Milligan his Character 'Eccles'. When asked "Do You know Eccles" replied "Der, yer, I know Eccles".

Please Do let me know, about Donating myself- sounds a bit Rude, put like that!

Warmest wishes

AndrewT

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Hi Andrew, I did message John, a few days ago, but as yet, he hasn't replied. I do remember Dads Army, what a flash from the past eh... Hilarious they were and of course, the Monty Python team, whose quirky humour was also a work of genius, that not many people could understand. Those days are long gone, and gone too are the old fashioned values... Such a shame. I'm seeing my specialist nurse next week.. I will be mentioning my intentions to her, as well as leaving a message for my consultant to ring me. In the meantime, I will google the subject of leaving ones body to medical science... You never know!! 🐱

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Dear Suzycat,

What a Lovely 'Name', by the way, How did you Come By it- if you don't mind me asking. I'm picturing a Beautiful, 'Homely Girl', maybe the Sort who has Hot Soup 'On the Go' at ALL hours. Maybe, with an apron, tied at the middle- perhaps (very) well endowed, in a 'Matronly' way. Children wiping their hands & faces (and blowing their Noses!) on your apron's edges. Am I even close? Even IF I'm wrong about the Children, the Apron and your 'Assets'...I'm sure that you ARE Beautiful- Certain of it!

I have ALL the Monty Python series and one of the films- the Meaning Of Life. I want to Get 'Life Of Brian' and will, at some stage. I can't keep buying, this soon, after Christmas....I'll get, one of 'Those' letters, from the Bank. You know, the ones, 'Can we Go Back, To The Original Agreement....When You Kept, Your Money, With Us!' Presides I just bought, the first two series, of the Onedin Line.

I have just got back, well about an hour ago, from seeing an Andre Reu (I think that's right?) Concert, at the local Cinema. Don't laugh, it is a Genuine Recording, and you, really do- at times anyway- feel like you are actually there. What a Wonderful afternoon, it was around Two, and a half, hour long. He introduced a girl, I can't remember her name, who played the Bagpipes- she had had Breast Cancer, ten years earlier, and had Fought her way back! (It's a, very good 'Job', that I put on a 'Heavy Duty' Pad though. I was well 'Hemmed In' and needed to GO. Truth be told I was already, quite wet, when we got there....)

A few 'Silly Ones', to brighten- or kill?- your day. What do you call a Penguin, in the Desert?.....Lost! What do you call a girl, who stands between two 'posts'?.....Annette! What do you call a boy, with a seagull, on his head?....Cliff! What do you call a girl, with one leg longer than the other?....I-Lean! If she has legs, the same size, then she is....No-Lean!

I know that this Isn't the 'Best' question Suzycat and I, honestly Won't be offended if you don't answer it, but do you Wet, or Mess yourself? I only ask because I know a, fair few, of us do. I Don't mean any offence here and, I'm NOT, trying to 'Pry' honestly.

On a happier note, for ME anyway, It's due to get Wetter- maybe colder too, mind you it IS Winter! The Wet Weather helps me Move better, unless my Rheumatoid Arthritis 'Starts' of course. I can also POO better...I Can't F..king Wait, for That! (Sometimes, if I'm VERY lucky, I can Mess my Bed...Maybe 'Disgusting' but SO relieving- you have no idea!!!) Last year was Dreadful, really long periods of, Very Dry, Weather.

Anyway enough of such talk.....Maybe a little 'Toilet' related joke? A little boy, in class is asked, to recite the Alphabet. The child begins "A, B, C, D......L, M, N, O, Q, R, S, T...." "Hold on Simon" says the Teacher "Where's the 'P'?" To which Simon replies "It's 'Running Down', my leg Miss!".

I am, currently cooking, Leak & Watercress Soup. It is a Lovely soup, with Leak, Watercress, Butter, Cheese, Stock, Milk and Water. Basically, cut and fry the Leak in butter, add the washed Watercress and let it Wilt. Then add Milk, Kettle water, Stock, White pepper (just a little) and, again just a little, cheese. Make, the mixture 'Up', to about two Pints. Simmer for about twenty, to thirty minutes, before Blending. I have a Stick Blender- the best Blender I have ever owned incidentally- so I can Blend, the Soup, 'In Stitu' as it were. Be VERY carful, how much white pepper, you add...DON'T add too much, better to leave it out!

Once again, I hope that I haven't offended you, with my 'Toilet' Humour or references, Suzycat. I still, Absolutely Love, your 'Name', no doubt Beautiful girl.

Warmest Wishes, slightly belated, Happy New Year.

AndrewT

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Omg Andrew, you crack me up man... Hahaha... I was christened Susanne, thats how I got my name... Lol... Well, you asked! I am ample, yes, but only because of Mr Steroid, who kindly donated 5stones of extra weight to me, over the last 3 years. Im a geordie lass, no snotty children, hanging off my non - existent apron strings lol. I guess I was a pretty girl once, but illness and medication have put pay to that, but I'm not bothered... Just pleased to be alive. I am not incontinent, in the strict sense of the word, but age has given me a weak bladder, so I can't wait too long before I need to 'go'.

Heres another toilet joke for you: what 9 - letter word means constipation?

Answer:.. nnnnnnnnn..... Lol

There you go... Pet... 🐱

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Happy new year!Your intentions are admirable but here’s hoping you have a long and enjoyable life before your instructions kick in.

How are you doing?

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Hi Paddypop, Happy New Year to you too. Yes, I intend to live a bit longer lol. Im okish, due to start azathioprine this month and not looking forward to it, but I'm not feeling as well as I should, so here's hoping it will make a difference. I got my appointment for an MRI scan but had to cancel as it wasn't an open scanner. My consultant didn't listen when I told him I was claustrophobic. So thats something else thats testing my patience lol. You learn to be very patient, with this illness, I think.

Hope you are doing ok 🐱

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I’ve thought about this too, and started with the information here

hta.gov.uk/donating-your-body

Good luck!

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I know that people with MS can donatetheir brains after they die....but you have to set it up well beforehand. This lady i knew had to get her body into cold storage immediately and then a team from London came up ASAP to take the parts for the research. This happened years ago and I don't know if there are similar arrangements for vasculitis. I think John should know or maybe the Leeds hospital where a lot of research into vasculitis is coordinated.

Hope you find out. I'd like to know too. My brain is pretty shot to pieces too!

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Hi roshough, fortunately, my brain is ok... I think... Apart from my 'pred-brain episodes lol. I have sent a message to John, some days ago now, but no reply as yet. It seems to be a complex procedure lol, but I'm going to speak to my consultant in the first instance, as he's sure to know. It's certainly stirred up a lot of thought here lol, but I want to do it. I have aortitis, which is quite rare, I think, so research might take my hand off, if I offer my aorta... Hahaha.. No pun intended... I'll update on this thread, but be patient, these things take time, as I'm told frequently by my medics.. Thank you for your input 🐱

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