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Schwannomatosis &
Legius Syndrome

Schwannomatosis & Legius Syndrome

The vast majority of people who have nerve tumours, will be categorised into Neurofibromatosis Type 1, or Neurofibromatosis Type 2. However, that isn’t to say that these are the only conditions that fall under the banner of the neurofibromatosis. 

In an extreme simplification, Legius Syndrome shares some similarities with NF1, but typically patients don’t develop neurofibromas (nerve tumours) and likewise Schwannomatosis shares some features of NF2 but doesn’t typically feature hearing loss. These conditions are different both from NF1 and NF2, and each other.

Both conditions are extremely rare. There are no accurate figures to reflect quite how rare either condition are, but as research progresses we hope to learn much more about these conditions.