Interviews for iToBoS: Marjolein van Kessel from Naevusglobal

Today, we spoke to Marjolein van Kessel from Naevusglobal. 

Marjolein, thank you for agreeing to speak to us!

1- Can you tell us something about yourself and your relationship to Melanoma?

I represent people born with congenital melanocytic naevi (CMN) and their direct family. CMN are nevi present at birth, which can turn into melanoma. The melanoma can be in the skin, but also on the leptomeninges (the soft wrappings of the brain).

My personal relationship: my son (1998) was born with CMN and died in 2012 because of melanoma in the brain (neurocutaneous melanocytosis).

2- Why is the early detection of Melanoma so important in your opinion?

It is still very difficult to treat melanoma in CMN as it is almost always caused by the NRAS mutation. Melanoma with NRAS mutation is very hard to treat. When detected early there are a few treatment options that can delay the spreading and growth. We need more treatment options. (Neurological melanoma is even harder to detect and treat.)

Melanoma in my patient group often starts at a very young age. Once melanoma is detected most of them die before the age of two years or before adulthood.

Melanoma is a rare complication for people with CMN  (2-5%) causing a lot of anxiety among the entire group. People need to have the CMN checked on a regular basis. Early and better detection can take away some of the anxiety.

3- What do you hope iToBoS will deliver for Melanoma patients?

  • Early detection so people can get treatment in an early stage when CMN becomes melanoma.
  • Better detection when monitoring CMN.
  • Research of the results. More/better statistics on the risk of melanoma in CMN.
  • Less anxiety for people with CMN. The people are at risk for melanoma, better/easier monitoring can help.

Thank you so much for your time!

For more details:

Marjolein van Kessel and Benjamin Löffner