Harriet

I am sharing my personal story for several reasons. Firstly, I hope that by sharing my story I can play a small part in raising awareness of my exceptionally rare cutaneous (skin) lymphoma. Secondly, I hope that it encourages others to not give up when you know something is not right with your body, and you’re still not getting the help and the answers that you need. Finally, I wanted to share how Lymphoma Action helped me find the answers that I was looking for which, in turn, enabled me to move forwards positively and to fully come to terms with my skin condition, one that I will be living with, and managing, for the rest of my life.  

I first realised something wasn’t right with my skin when I was 14 years old. I was sunbathing on holiday and I noticed numerous dry, flaky, scaly patches which didn’t tan, and which felt and looked like parchment or cigarette-paper. No amount of cleaning, scratching, scraping or moisturising made them go away.

Initially, they were scattered across my stomach, lower back and buttocks. However, over the years they have spread slowly across a much larger surface area of my body. Right now, they are across the top of my thighs, buttocks, trunk, underarms, arms, and breasts. My pale white skin and certain lighting makes the patches difficult to detect with a quick glance, but whenever I tan under natural sunlight the patches on my skin don't. This means my skin then has an alarmingly obvious mottled appearance that is startling to those who are unaccustomed to seeing it. 

Comments from strangers about my skin motivated visits to GPs and dermatologists. Repeatedly, I was misdiagnosed and treated for a variety of different skin conditions; eczema, ichthyosis, tinea versicolor, vitiligo and dry skin. No treatments had any positive effect, the doctors didn't have any answers, and there was there no follow-up. This period of uncertainty and the failure of treatments exhausting and upsetting.

After 17 years of looking for answers and getting nowhere, I was close to giving up entirely.  After yet another comment from a well-meaning stranger during a sunny holiday in 2019, and with some loving encouragement from my husband, I found the strength to pick myself up and persist with the elusive task of finding out what was wrong with my skin.  

Thankfully, I was finally referred to the right specialist and was told that I have a T-cell lymphoma called Hypopigmented Mycosis Fungoides (HMF). Despite the more serious nature of this condition, when I was told about it I felt an enormous weight lift off my shoulders. Looking back, not being diagnosed for so long significantly affected my self-esteem and mental health.

I immediately started treatment, which consisted of using steroid cream and five months of phototherapy treatment. Unfortunately, after a brief period of complete remission, my patches came back. I'm on active monitoring (watch and wait) and I will have regular courses of phototherapy to manage and control my condition for the rest of my life.

My consultant was excellent, but I was left with some unanswered questions, and decided to find out more information myself. I knew my condition was incredibly rare but I was surprised at how little information, let alone up-to-date medical studies, were available. When I finally found the Lymphoma Action website I was relieved to find a wealth of information. Along with the personal stories of others, this really helped me come to terms with my condition.

I very quickly became more informed and was able to get the closure I needed to move forwards positively with my life.

I no longer felt alone and my anxieties significantly lessened. The importance of finding the answers that I needed was life-changing. I feel empowered not to let my lymphoma define me and how I feel about myself. I am determined to live well with it, and to not let it live my life for me. Now, when I look in the mirror I don’t feel confused, upset and sad. My focus on what's important in life has sharpened. I am making better choices, and in some ways I feel more alive than ever.

This is where my story ends. It’s time for me to get back on-board the ‘train of life’. But before I go, it is my sincerest hope that my 17-year struggle to find answers and get the right treatment encourages anyone who is similarly struggling to keep going. It is so important if you feel that something isn’t right with your body to trust your gut, to keep going, and to not give up on yourself. As downhearted as you may feel about the likelihood of getting there now, if you keep striving to find the answers you will be much more likely to eventually get the right diagnosis and help that you need. If that message resonates with even just one person who needs to hear it, then I’d like to think that my brief stop at this station, during the course of my life journey, has been a few minutes well-spent.