scleroderma group on facebook

[lizzy]

hi all, my name is Liz Leadbetter, i am in a few groups on facebook for both raynauds and scleroderma, if anyone would like to join either groups please message me on facebook and say which group you would like, i will need to add you as a friend before i can add you to the groups, you will be in contact with people from all over the world, and lots of help and advice and most of all love and support

[AliW]

Thank you I would love to - what are the groups called? & I will search for them ... look forward to linking :)))

[lizzy in reply to AliW]

they are private groups so you need to be added by a friend

[lynbw]

Thank you ,i will join , what a good idea love lyn

[lizzy in reply to lynbw]

try to find me now,, fingers crossed

[lynbw]

Hi Lizzy , i have tried to find you on face book but no luck any advice lyn

[lizzy]

i will change my profile pic, to the same one i have in here see if that helps you

[lizzy]

i have changed the pic on here to my profile pic i use on facebook,, but if you want to leave me your details at [e-mail] feel free and i will see if i can track you but as i don't know what you look like that may be difficult,, but the groups are worth being in,, they have helped me no end

[TJme]

Hi Liz , is your profile set to private ? you don't come up on the search results .I have a separate email for facebook please add me [e-mail] .I am a member of one of the Raynauds groups but it seems to be mainly US residents use it .I would be interested in joining your group .

[lizzy in reply to TJme]

ok i will see what i can do

[Danielle]

Hi. You must have your profile set to private on FB as you don't come up on the search. I am a 38 yr old woman with both Raynauds & systemic diffuse scleroderma living in Aust. I'm about to have a stem cell transplant so happy to chat to anyone that would like to.

[living-the-dream-ssc-ray in reply to Danielle]

wow Danielle... your details sound like me but I am in the UK !! Luckily I responded to mycophenolate back in 1999 - 04, and so did not have to have the stem cell transplant scheduled for me !! I have recently read an article which gave very positive results about stem cell transplant therapy for systemic sclerosis... I think I read it on the US scleroderma society's site - so check it out !! Presumably you will have had the treatment by now ??? as you posted in April .... How are you ?? How was it ?? I do so hope that you have the same encouraging results as those in the stem cell transplant study.... Blessings to you my brave friend !! everytime I used to take a mycohpenolate tablet with the threat that if it did not work I would be having the transplant, I used to tell myself that 'this tablet is going to work' and then I would swallow it !! Happy winter solstice to you x

[lizzy]

all i can suggest is to e mail me your details and i will try to find you on facebook and add you as friends then i can add you into the groups,, there are a few some for just ranauds and others for scleroderma and some for just information on scleroderma issues,, these groups have helped me no end,, before i had their support i didn't know which way to turn

[lizzy]

i have put my facebook account to public,, so maybe now you will be able to find me

[dex1]

What is the group called on face book? There are a few come up whenever you type in Raynauds. I have joined the closed Raynauds one. Is this the one that you were talking about?

[angelah]

hi there i would love to too

thanks

[lizzy]

these are some of the groups on facebook,

raynaud's phenemenon/disease/syndrome,

raynaud's group,

world wide scleroderma,,, this is my own group,

scleroderma issues info,

scleroderma chats,

scleroderma angels, scleroderma family (uk)

these grouops are private i don't know if you will be able to get in without being added by a friend,, i have change my profile to public, see if you can find me and send me a private message,, or a friend invite but let me know who you are as i don't add friends unless i have someone in common or i know them

[lizzy]

facebook.com/?groups/sclero...

see if this link works

[mikejr]

This is an open Facebook group we are hoping to grow: facebook.com/sclerodermauk

[suzierwp330]

would love to join lizzy thankyou

[lizzy in reply to suzierwp330]

yes i would,, although i love the groups i am in and adore the people that are in them,, they are mainly americans, and other countries

[suzierwp330]

Hi Izzy im not American im from united kindom [British ].i love chating on here and it helps me alot i thank you

[lizzy]

i love my american friends and the friends i have have made from other countries,, it is so nice to be able to chat to people from all around the world, but i would a few more from over here in the UK,, I would for more brits to be in our groups

[eletra]

Hi Liz I would very much like to join the group. I have Scleroderma with Raynauds. Regards Michele.

[eletra]

So Sorry You will need my Full name: Michele Huntington.

[lizzy]

it would be easier to track you if i knew what you looked like and also your profile must be set to public,, and i need to know where you are from it may help in the search, but i will try to search you anyway,,, but i have set my profile to public and my profile pic is the same as i have on here except it has a marie curie daffodil on it

[lizzy]

Michele i think i have found you,, but anyone else i need full names, and it would help if i knew where you are from, and i knew what you looked like,, or track me

[bellejewel]

hi lizzie, i am on facebook. i too have sd, crest. i have tumous calification. do you have that. its nice to talk to others. glad i found you all. god bless, belle

[debbie7]

please join me Debbie Farquhar on facebook, my daughter has juvenile linear scleroderma, she is age 9

[living-the-dream-ssc-ray]

I am confused with all the different fb groups !! it doesnt take much to confuse me haha ! I have liked the raynauds and scleroderma association site and find it quite informative along with the website ! as well as the scleroderma society us and uk pages ! are there any others that I am missing ?? thanks

[suzy66641 in reply to living-the-dream-ssc-ray]

Confused toooo lol I think i have just asked to join a group I am already a member of derr lol

[ouchfingers]

Can you please add me to your scleroderma & reynauds groups?

My name is Liz Raschilla (Australia)

[jacs43]

hi would like to join your groups my fb name is jacqueline clarke from bolton manchester i have both ravnaurds and scleroderma ,would love to get to know more people with the same health issues , thanks x

[Madusa in reply to jacs43]

Sorry Jacqueline just saw your post and noticed your from Bolton, I'm also from Bolton and just been diagnosed with MCTD (Scleroderma, reynauds, RA upto now). It's so good to know there is someone local x

[woodiebyrne]

Hi could you add me to the closed group please