Shout out for this rarest of cancers, anybody out there with EMPD I would love to chat.
You may want to check out the extramammary Paget’s disease (EMPD) website – www.myEMPD.com – that was created to help assist those that have been diagnosed with EMPD, those who have EMPD symptoms and family members of those with EMPD. The site has information for both women and men. From that website you can be connected with others that have been diagnosed with EMPD.
Many thanks for the response. I am working with the male editor of the website. All of the lady members I have provided, I was looking for any ladies in the UK. It is all based on USA hospitals and doctors etc.
Many thanks after 5 years I have finally found another UK patient. I have replied to her message and private messaged Joan. Many thanks for alerting me
Just been diagnosed with empd after 3years of being treated for lichen planus really appreciate any input especially aldara cream i am struggling with side effects would love to connect with other ladies out there
I was diagnosed on 10th October and just had surgery to remove. It is difficult to find or get much information as Paget's is so rare. Just about coping with pain and discomfort. Final results in 2-4 weeks with follow up. Sent you a friend request if you want to ask anything else.
Hi Clare i was diagnosed in September with empd after being treated for lichen planus.I am treated in Coventry using aldara cream as surgery is not an option for me but I have the most terrible reaction to it I have had to stop for the time being until I see consultant in a couple of weeks i am his only patient so I feel really isolated I hope your surgery went well iwould like to keep in touch and compare notes .I,am67 retired and live Warwickshire
I am new to this forum - I was diagnosed with EMPD last February 2018 unfortunately surgery is not an option and started on a 16 week course of Aldara after a lot of examinations. I recently started another course of Aldara has anyone any advice and encouragement as it seems a lonely struggle
Hi rgd l was diagnosed in September 17 after a three years being treated for lichen planus .My empd is guite extensive i do not want surgery i have tried aldara once i am currently under going pdt treatment under dermatology there is no one fix for this condition and the reacurance is so high and will use aldara again as i do think it made some difference but we have definately to be our own advocates in this.Please feel free to message me with any questions you may have .Best wishes Oscar 8dog
