Hello all,
Lovely to see so many friendly messages here. Hoping I can find a bit of community with those who have also been affected by this.
I have recently been diagnosed with stage 1b CTCL (Mycosis Fungoides) and am about to start UVB therapy. I first developed a rash in 2017/2018 and have been pursuing a diagnosis since (which was frustrating but got there in the end). I've been lucky to end up with a fantastic consultant and lovely nurse to guide me through the whole process. They've been really reassuring and understanding.
As you will all know this is a condition that usually affects older people/ men- as a 27 year old woman I have struggled to find others in my position- I would love to hear about how any younger people (especially women) are doing following being diagnosed. It would be nice not to feel so unusual/ alone in this despite amazing support from my friends and family.
Thanks so much,
Madeleine
Hi Madeline madeleine and welcome to this corner of the community but sorry to hear about your MF diagnosis.
Even although my amazing Dermatologist was 99% sure I had MF it still took a good year and 6 biopsies to get the pathology to prove it….. some people will go your and not get diagnosed as it’s often seen as Psoriasis. The National get together of Scottish Dermatologists was help in Inverness a good few years back and I was there with a few other patients as my Dermatologists show and tell 
Out of 60+ Dermatologists only 3 had ever seen and treated someone with MF….. the rest had only seen it in books….. we are a rare group of people 
Yes you are young to have MF. I was diagnosed coming up to 24 years ago at 43 but I most likely had been living with it for a few years before…… but I have talked with others on here and on another Lymphoma support platform who were in their early 30s when they were first diagnosed.
UVB is a straightforward treatment and normally makes a good difference….. my wife and I used to joke that we took separate holidays I often had a sun tan when she had pail-skin.
This is a life time journey and most people will live a normal ling life having various therapies to get your MF into partial remission then a period of calm then back on therapy.
Until I took early retirement in 2011 I had been working 12 years in a demanding teaching job in a University on a full time table at the same time as I was having all my various treatment and on the whole my MF was controllable and lived a normal full life.
Always around to chat.
Hi again madeleine there is a wife of a man just joined the group who’s husband was diagnosed with MF when he was 27
Hit the main T-Cell group heading then look for the thread ‘Dressings’ and if you want to connect with her hit reply on the thread.
Hi Maddy madeleine and well done signing up for the London Marathon.....all the best with your training.
It took about 16 years for me to actually meet and talk with someone with CTCL.... I was at our local Maggie's Centre Haematology Support Group and he was sitting beside me...... it was rather bizarre.
You may also want to check out Lymphoma Action - Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc covering all things Lymphoma.
They also run various Support Platforms and recently launched a monthly group specifically for Cutaneous (Skin) Lymphomas (LINK). I highly recommend these groups as there is nothing better than talking with other who have walked the journey...... I unfortunately have a long standing engagement when the CTCL meetings are on.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. i am a buddy covering CTCL.
They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.
Always around to chat ((hugs))
