Contacting platespinner who has Paget's of the vulva

Hi Joray

One of the ladies on here was kind enough to message me to alert me that you were on here. I have been a patient for 5 years and you are the first person in the UK that I have found. EMPD is so rare I think it is one in 70 million ladies have it. We are so rare we dont even appear on the rare cancers site. I have private messaged you if you want to chat. 

Morning Joan.
I've moved your post from the Ask a Nurse area into here - the vulva group.

Here is your original post

Unknown said:

good morning , I don't know how to contact this person on the web site were do I go to to message her , I am not that brilland on the iPad , 

Please help me to get in touch with someone who from what I have read on her blog that like me she feels iisolation. 

It has just come up she has now befriended me but I am nor sure what to do 

many thanks 

Joan 

platespinner will get an email notification because she has been mentioned in this post.

Now you can accept the friend request and send her a private message.

Or you can exchange messages here on the forum.

-- edit - crossed posts! - morning platespinner, glad you've made contact :-)

M.

Good morning to you , 

thank you so much for contacting me , 

i had my first op on January 2016 , then my 2nd June 2016 , and after my last check up I New something was not quit right  and so I go in to morrow for my 3rd op , my 2nd op has not fully healed, I don't know till I get there to what extent they will remove , my last 2 ops showed no cancer but that is one of my concern when I get the result from this one , 

i am so glad I have found some that has Paget's to talk to because I feel so isolated , not only have I got Paget's , but my consultant said it does not present like any she or her colleagues have seen , so not only have I got Pagets but mine is a rare Paget's . 

I live in Leicester , and my consultant is Miss Moss at the Leicester General Hospital, 

i don't know about you but I feel really isolated  even the doctors don't really understand what they are dealing with 

I also have Coeliac disease , and also have to self catheterise , 

how may Operations have you had ,

many thanks 

Joan 

Hi Joan!!! My name is Vasso.I m from Greece.My english is so band.I had diagnostic with paget disease vulva from 2009.I had one surgerie.My doctor is in Paris.Ihad no an other surgerie from 2011 . Only take Aldara cream. I want to be friends.Please contact with me inbox to exchange information.

Hi 

If you click  'Join This Group' at top you can start a new discussion. Your reply message is to old 2017 discussion.

You can also click here to read Paget Vulva discussions, best to join the group to start a discussion for yourself 

G n' J

G n' J tha

Thank you very much!!!!