I thought we should have a topic title called updates so there is a place to look and see how everyone is doing. I am hoping most of you are doing fine after the surgeries have healed up nice. But as this disease can and does reoccure, it might be helpful to see how we all are doing from time to time. So here is my update. I started the aldera a few months ago. My surgery wound had just finished healing over with new tissue. After just a few applications of Aldera the skin in the healed area would split a bit and become an open sore, with the usual slight bleeding and some slight discomfort. Since my disease is in the peri anal area, we had to go back to the "keep is very clean" process. Which was almost as much attention as the healing process. I started and stopped 3 different times, each time after the new sore was healed. So we have taken a break from being a patient and are sticking our heads in the sand for the summer. Knowing full well, that this may not be the best choice for keeping it from returning. Has anyone else had a good experience with Aldera? Has anyone else used Aldera after their surgeries and had it come back? If so how many months/years for it to return? Take care and hope to hear from you all soon. Marilyn/EMPD

Hello Everyone! About 3-4 months ago, my 89 year old mother was diagnosed with EMPD. Best estimate is that she's had it for 25 years or more, completely asymptomatic with the exception of redness of the vulva. No itching, no lesions, no "nothing". Nothing, until she recently had an absessed tooth that required penicillin as treatment. The penicillin made the vulva itching unbearable. After annual check ups for 25+ years, always responding that she guessed the redness was a birthmark (and NO further investigation from any MD!!!), the OB/Gyn she saw for the itching immediately recognized that there was a serious problem and recommended biopsy. Mom had a second opinion, who basically said the same thing. A biopsy was done, and a diagnosis of EMPD came. As you may understand, I immediately responded with a a whirlwind of research, thanks to the Internet. At her advanced age, Mom was completely against surgery, chemo or radiation. Consequently, I was looking for informaiton about the condition, what we could expect of its future and any non-invasive treatment. Fairly quickly, I found several research projects using Aldera (Imiquimod) in conjunction with and/or in lieu of surgery. Boldly, I emailed all researchers in the US. Graciously and compassionately, I heard from several, including a phone call from Dr. Yi in California and a referral from Dr. Ken Hatch in Arizona to Dr. R. Wendel Naumann in Charlotte, NC (near my home). Mom is now under Dr. Naumann's care. Thankfully, he concurred that surgery for Mom was not reasonable and was willing to prescribe Aldera for her in lieu of surgery. Mom is having a great deal of difficulty with the Aldera -- severe burning creating open lesions, etc. (She alternates self-applied treatment days -- Aldera on Monday, Wednesday and Friday, and a steroid treatment on Tuesday, Thursday, Saturday and Sunday.) Mom is not at all sure that she will continue with the treatment. She has already had to stop Aldera twice after three treatments because of the discomfort. As she will be 90 in December, the discomfort may simply be more than she is willing to bear. Without question, surgery is still the most accepted treatment. However, more and more research is being done -- around the world -- using Aldera as an alternative treatment. Sloan-Kettering (in NY) is doing a clinical trial on Aldera in lieu of surgery at the NY campus as well as LSU (Louisiana State University). Regardless of Mom's outcome, I will forever be glad that I found a treatment that she was willing to try. I will also forever be grateful for Dr. Yi's, Dr. Hatch's and Dr. Naumann's compassion, integrity and clinical expertise, as well as their tireless efforts to offer solid, appropriate, non-invasaive medical intervention. As Dr. Naumann's RN told me, look to NIH (National Institute of Health) for solid medical information, rather than other Internet sites. Although well-intended, many websites offer misleading (or simply incorrect) information. I am glad, however, that my research uncovered alternative work being done on EMPD, helping me learn more about the disease and putting me in touch with physicians across the US who, with great compassion, have been helpful, encouraging and supportive. I know this is long ... but I suspect that all who are dealing with EMPD want to know about all possibilities. I share our story in hope that it will encourage and support someone along the journey.

Wonderful up date, thank you for all your research. I too had the same result from the Aldera. But I was told this might happen and that ment that it was working. I started 4 or 5 different times to use it as told. When I check in with my dermatologist, he suggested I try less often, i.e. 2 times a week. I will try this next.

Just a note to give a quick update on Mark's condition. I am thankful to say that he's had 8 months "EMPD free" since he finished his radiation treatments in January. Although he still doesn't seem to be back up to full power (they said it could take up to a year) it has been so nice to not have to battle with treatments, creams & surgeries for a few months after the two-plus years we were trying each option that the doctors presented. I hope everyone else is doing well too!