‘My cancer with the stupid name’ – Rare Disease Day 2020

Dwayne shares his story of mycosis fungoides, a rare type of lymphoma that develops in the skin, and how it impacted him.

Dwayne - Rare Disease Day 2020

Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases globally and seek improvements in care and treatment for those affected. In Europe, a disease is classed as rare when it affects fewer than 5 in 10,000 people and rare diseases currently affect around 5% of the population worldwide. 

While lymphoma overall is the fifth most common cancer in the UK, there are over 60 different subtypes – some of which are classified as rare diseases and require different approaches and treatments. This can be challenging for people affected as there can be a lack of information available and it can take time to find out what treatments will work best. We aim to be there for everyone affected by lymphoma with relevant information and support and are committed to sharing stories of people affected by different types of lymphoma so that no one faces their lymphoma alone.

Skin or ‘cutaneous’ lymphoma is one of these rare lymphomas, affecting around seven people in every million in the UK each year. Mycosis fungoides, a type of slow-growing T-cell skin lymphoma, accounts for around half of all skin lymphomas. As it can resemble other less serious skin conditions, it can take some years before a diagnosis of skin lymphoma is made.

Here Dwayne shares his experience of being diagnosed with mycosis fungoides at 25:

‘When patches of my hair started to come out, I didn’t for a moment think it was something serious. It was therefore a huge shock to be diagnosed with mycosis fungoides. I had never heard of lymphoma and I didn’t research it as I thought it would just worry me. It didn’t really sink in that this was happening to me, until I started radiotherapy. 

Fortunately, the treatment was OK, the patches of lymphoma went down and my hair started to grow back. This seemed to be a sign that the treatment was working and was also massive in rebuilding my confidence. 

After treatment I was able to put it to the back of my mind, but over time I have realised that emotionally it has affected me far more than I really acknowledge. As it’s so rare, I felt like I was going through it alone. No one knew what the name meant and a lot of people thought it was some sort of fungal infection. 

If I feel unwell at any point – and recently when I had back pain – my first thought is about my lymphoma, and I feel it will always be present in some way.’

As it’s so rare, I felt like I was going through it alone. No one knew what the name meant.
Dwayne, diagnosed with mycosis fungoides at 25

If you'd like to get involved to support Rare Disease Day, why not share your experience on social media using the hashtag #RareDiseaseDay? You can also add the official Facebook frame or Twibbon to your profile. 

28 February 2020