I have suspected Lymphangiomatosis for some time, but there is little information here in Australia, and little interest in the condition (is my experience). I have read a great deal about this condition, and have many symptoms. I was curious whether any patients have suffered symptoms to the face (ie diffuse as opposed to localised malformations), and how these symptoms appear to the eye, and within pathology findings. My difficulty is finding anyone who even resembles my appearance, or specific symptoms. My condition is multisystem; other areas effected are liver, small intestines, maybe lungs? 

Thanks, it is difficult to imagine someone sharing this condition at all…my best wishes to each and every sufferer to find health, and the support they deserve :)

Hi Jack, thanks for the kind words and support,actually we have spoken in the past I believe….you were unable to assist at the time, but I hadn't tried the forum and realise this is a great avenue to try:) No conclusive diagnosis has been made as yet, but I continue to hope.

To clarify I have no involvement of the eyes, symptoms are related to skin and soft-tissue in the face. Being diffuse, my symptoms relate more to vascular and connective tissue pressuring the epidermal layers to the face and neck, subcutaneous skin involvement (micro cysts could be present in this level of tissue). It is the vascular (scarred) tissue pressuring the outer layers (causing constant skin breakdown and disfigurement  that have many baffled, I'm wondering if anyone out there may also have this issue? So far it appears to be unheard of. I hope to find otherwise, although the flip-side would be genuine sadness to hear of anyone else suffering this symptom.

Bye Jack, and thanks again!