My son has lived with LM ind his mouth and tongue since he was born...we have seen it grow and change - even though they said it probably would not do so.
We are quite sure thar his LM is in other parts of his body as well - even though the doctors seem to be unaware ore unwilling to accept this fact.
To us it seems like the doctors dont have to much experience and knowledge, maybe because there is so very few of these patients world wide.
I am sure that this group will help spreading the knowledge and the sharing of experience will be of importance in the development of new types of medication and surgery.
Keep up the spirit -