Mycosis Fungoides Support Group

Hello! I am a 28 year old Mom to 3 little girls. I have had awful skin for over 10 years. I was always told that it was a type of dermatitus. Last October they did a biopsy and it came back as again dermatitus but also a possibility of MF. I wasn't told this at the time by the doctor so when I came back in March he performed another biopsy to confirm MF. It has come back as probable. Due to insurance I now am waiting until June to go back. My husband lost his job due to it closing so our insurance ended March 31 and are now on a short term policy until we can get it in June with his new employer. Talk about crappy timing. I am just looking for support. Some days I am sad/upset that it took this long to find out but some days I have accepted it. I am hopeful that I can someday soon war shorts without feeling like everyone is looking at my skin.

Hi, my husband 31yrs old was diagnosed with MF in March. He has been doing the UVB light treatments since then. He was going 3 days/ wk and is currently going 2 days/wk. His Doctor is happy with his progress, but he has seen new spots appear. The doctor says this is normal and does not mean the treatment is not working. He has a great doctor that we trust, but somedays we struggle with accepting it all. I noticed that you have 3 little girls. We have 2 girls, 3yrs and 1yr. Most people seem to be older when diagnosed, so I could relate to your situation and hope you are well on your way to treatment.

My husband had a hard day yesterday and I felt that if I found people to talk to that are going through what he is, that I could help him cope a little better.

I just had my first appointment with my specialist. He sounded pretty sure that we were going to tackle this! They said that I am in the very early stages right now. I am going to try sun exposure 20 minutes a day and 5 days a week with an ointment for my bad spots. I go back in Sept to see what he thinks and move on from there. I just want to feel normal. To wear shorts and not worry about my spots and such.

My girls are 8, 4 and almost 18 months....all little divas.

Feel free to PM me and we can stay in contact. I also haven't seen to omany people this young with this.

I wish the best to your husband. He will conquer this!