The Itchy Inferno

Hello,
My name is Selina, I am 24 years old and have unfortunately discovered I have Fox-Fordyce disease. The disease has affected my axillae (underarm), aerola, and genital regions with smaller papules in the chest and navel area as well. The symptoms I experience have consumed my life and have spiraled me into a deep depression. I used to be energetic, confident, enthusiastic and bubbly...but since the progression of this disease I have become the complete opposite of these attributes. I feel intense deep prickly pain and itch typically when I wake up, at random point during the night while I'm asleep which causes me to wake up, and most notably when I feel any heightened emotion such as excitement, nervousness, anxiety, anger, arousal, and joy. These are the emotions that I have been forced to control and suppress thanks to this awful apocrine disorder. I began to first feel the symptoms as I was recovering from a 3 month long respiratory infection which caused me extreme stress throughout its duration. I am not sure if that experience triggered the closure of my apocrine glands or if it was just mere coincidence. My life has drastically changed and has been adversely affected in the extreme. There must be a way to treat this condition, if they have treatment for cancer and diabetes, there has to be some way. The problem is that no one is looking into it. I have been prescribed adapelene and pimecrolimus creams and the adapelene has shown slight signs of healing only so far in lightening the skin and shrinking some of the papules. I am still in the middle of experimenting with this as it is a highly skin irritating cream and I've had to take a break from using it. I'm hoping that more people speak out about there symptoms so that more research can be done on possible treatments. Thanks for reading...Selina S. -Toronto, ON
SellySab SellySab
22-25
1 Response Jan 12, 2013

Hello,

Glad to find someone else with this disease...although I'm sorry we have it. I'm 20 years old and I got it last summer. When I went to the doctor she though it was from shaving...I didn't believe it though because there is no way shaving could cause such an itch. I went to a derm and that's how I found it was FF. I tried retin A but it was extremely irritating to my skin. She then prescribed me a steroid that did nothing and a milder form of Retin A but that didn't work either. Sooo, now I'm on birth control. My doctor thinks hormones have to do with the disease so I'm on a low estrogen pill which is doing nothing but making me gain weight so I think I am about to give up on it. A lot of websites said it tends to get better with pregnancy, but I am not planning on having any children for a couple years. So I may try a higher estrogen pill. I don't know....it's horrible!!! I have never experienced an itch like this in my life. I completely agree with you that there should be some kind of cure...anything! I usually wake up one time every night because of the itch. My armpits are so sore from scratching. At work I have to run to the bathroom because the itch becomes intolerable. I know exactly what you're talking about with the whole emotion thing. I get nervous very easily so if I have a presentation or something in class I feel like scratching right then and there. How long have you had the disease? I've had it less than a year and I already feel like I'm going crazy. I'm so not looking forward to this summer =(

It doesn't get better with pregnancy. I promise