First uk mpn support group

[Shelly1960]

So proud and pleased I started the first mpn support group in the uk at maggie's nottingham now taken over by maz and mpn voice and angela the specialist nurse from notts city hospital but wish them well and sure it will be a huge success well done to us all xx

[JediReject]

Hi Shelly - Yeah here here it's a real achievement to not only get a group up and running but also to make it a success. I know this from experience as though I didn't set our Blackpool group and can't take any credit my wife and I have been there since day 1. I just wish it was a little better supported and I know how hard it is to get 'bums on seats' and keep them coming back. Our group leaders do a great job and try to get a guest 'speaker' each month. I think the fact that for convenience we hold it in the Unit at the hospital may deter a few as I must admit I don't always relish going after spending half the previous day there.

I hope your meeting continues to flourish. Well done JR

[Shelly1960 in reply to JediReject]

Ty Jr I am sure it will go from strength to strength

[Paul42 in reply to Shelly1960]

Yes well done Shelly, are you coming along tonight?

[Shelly1960 in reply to Paul42]

No its my aunts funeral so unable to make it

[Hidden]

Thats great, im in kent here in the Uk ans fairly new , just found out im jak2 positive will see heamatologist on 29 th platelett readings 506 im 62 year old and been tested for ET 😞

[lizzziep in reply to Hidden]

I'm up in Gods own county - Yorkshire! I have ET and am also 62 (just), I'm Jak 2 negative, been on HU for about 18 months, which has brought my platelet levels down to "normal" levels. If you're going to have an illness ET isn't that bad compared to many others! Don't believe everything you Google about it - I did and became paranoid, thank goodness for this forum with it's fellow sufferers talking sense about MPN's! Best Wishes!

[Shelly1960 in reply to lizzziep]

I agree I am glad I found this forum to maybe you will be able to come to one of the s support group meeting too

[Shelly1960 in reply to Hidden]

I hope there is a group formed down your way to might be worth asking in here as some people do meet for coffee and a chat

[Shelly1960 in reply to Hidden]

there might be a group down there ask maz she will know

[Hidden]

Hi izzziep, Thank you for reply Yorkshire is lovely place to live i agree my Gp thought at first i may be have pv so will see i may be down for Bone marrow test too , im afraid i have scared myself by googling and hubby gets annoyed bacause i then get upset i. always think worse any way ! i suffer with bad Arthuruitis also which doesnt help im told but i have had this over 20 years im trying to keep healthy by eating right foods i love chocolate of course and the glass wine im taking just asprin at the moment till see what consultant says on 29th like you though seems ahe of 60ish is common for these conditions boo 😥x

[Shelly1960 in reply to Hidden]

See if a group near or local members it's good to talk to each other and share information h elms to know you not alone and thus forum us great fir that too

[Shelly1960 in reply to Hidden]

will be thinking of you on the 29th

[Hidden in reply to Shelly1960]

Thank you Shelly1960 , its 5am and im awake with it all going round in my head all the worse senarios but so grateful to everyone on here mpd does seem to be very. rare it seems 😙

[Shelly1960 in reply to Hidden]

It is rare catwoman that's why I started support group so we could all chat together but also access accurate information from the mpn nurse and mpn voice and speakers when we required them I wish I had known you were aware as would have chatted as I was awake too but not on mpn voice regards michelle

[Hidden in reply to Shelly1960]

aww thank you since my last test came up positive for jak2 Dr at hospital wanted to see me before june hence going next wed . yes theres no where i can find here in kent no ones heard of it!! will ask at hospital when i go i agree with you accurate info vital , i have done the whole google stuff ! scary at times take care Holly x

[Shelly1960 in reply to Hidden]

See if there are people here that come from your area that want a group I contacted people on here and met for coffee I contacted maggie's at the hospital for a room to meet when I knew there were a few of us I was also lucky as our specialist nurse had also started at this time so was able to involve her and maz came yo our first meeting the support group has been a success and now run by angela and maz but has given support to mpn sufferers

[Shelly1960 in reply to Hidden]

Don't give up start your own group to make a difference

[Hidden in reply to Shelly1960]

Okay thank you Shelly ,will ask at hospital on wed , make enquirys of patients nearby and go from there maybe.? im under Medway hospital in kent sometimes they may no whats on in regard of support as there must be others like me out there just a matter of someone making first move like you say and if not maybe it can start with me 😀

[Shelly1960 in reply to Hidden]

That's Brill it's how I started and now up and running I wish you luck let me know how you get on

[Shelly1960 in reply to Hidden]

how did it go

[Phelpsy]

Thats great shelly ,it's wobderful to hear Great News , I reslly do wish I lived near I would be there with you , it's good to here there moving North , I feel there's not enough drop in clinics for us , sometimes we need to talk ( well I do anyway )

And it's not easy talking to family for me anyway , that's made my day hearing this Awedome news , x Pam x

[Shelly1960 in reply to Phelpsy]

I understand I started the group as me and my daughter need info on condition and support

[MFBMT2011]

Well done Shelley. I will have to try and get to one of your meets.

[Shelly1960 in reply to MFBMT2011]

They would be great be fab to meet you

[Shelly1960]

hi mfbmt2011 did you go to the meeting