FOSMN (Facial Onset Sensory and Motor Neuronopathy) is an extremely rare progressive and devastating neurodegenerative disease, having a huge impact on patients and their loved ones. It weakens the muscles from the face down to the neck, shoulders and possibly the arms, hands, chest and legs, causing difficulty with speech, eating and swallowing, keeping the head upright, weakness or loss of strength in the upper limbs and breathing. Development of the illness differs from person to person.
At this time about 100 patients are described in medical literature worldwide, but it is suspected more suffer from FOSMN due to misdiagnosis and unfamiliarity with the disease.
About this site
FOSMN.org is dedicated to gathering patients, researchers, medical professionals and 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, South Africa, New Zealand, Canada, the UK, Australia, Brazil, Poland and the US. We greatly welcome anyone else suffering from or otherwise taking an interest in FOSMN.
Some of us have been involved in a research project carried out early 2018 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.
4 Replies to “Introducing”
I am very new to this and I don’t think my issues are advanced as the other commentators, could anyone tell me how long the symptoms take to go from your face to other parts of the body?
Thanks for your replies. You may however get better response when posting on the forum: https://fosmn.org/forum/
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.
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.