Introducing

FOSMN (Facial Onset Sensory and Motor Neuronopathy) is an extremely rare progressive neuron disease. At this time about 30 to 40 patients are described in medical literature worldwide, but it is suspected more suffer from FOSMN.

About this site

FOSMN.org is dedicated to gathering patients, sharing patients’ experiences and information, and supporting initial research into FOSMN.

This site is created by a small number of FOSMN patients. Currently we are in contact with patients from The Netherlands, Norway, Germany, Spain, Portugal and the US. We greatly welcome anyone else suffering from or otherwise taking an interest in FOSMN.

Some of us are currently (early 2018) involved in a research project carried out by the University Medical Center Utrecht, The Netherlands, which aims at further understanding the causes and characteristics of this disease.

Please visit and follow our Facebook page for the latest developments.

2 Replies to “Introducing”

  1. Looking everywhere for comments from others who MIGHT have.some ideas on how to improve this condition. For example I have been taking as tablet CoQ10 recommended by my dentist & I THINK it may have improved my condition. I fell at least 1 or 2 times every month until around January 2018. Not at all since & have been taking CoQ10 all this year. However I have noticed a considerable increase in my salava.

    1. From my experience, there are no medication available for this condition. I try to keep active, going to the gym, etc. I also fell quite a few times (about 6 times since August), but luckily have not broken anything again . I was given a pair of foot support, which help keep my foot lifted, but it is such a faff to put them on in the morning that I had given up, recently a physio and a podiatrist told me to wear them regularly, so now I am waiting for an appointment with the orthopaedist to work out how best to manage with them.

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