Living with polyostotic fibrous dysplasia

I was born with this disease and lived in agony as it is in my skull. It made my skull grow odd and affected my ears and eyes and mouth and sinuses. I keep having to have operations but now I dont want no more. I am profoundly deaf as a result of this and suffer chronic underventilation in the sinus area and have really bad eye sight. I have swelling either side of my face at times which makes it difficult to eat or talk. All I suffer is pain now and again but when its constant then I go doctors to see what they can do but normally nothing they can do but operate. I dont know anybody who has this to be fair and I have had to deal with the pain on my own most of my life until I made the hospital do xray on my skull as an adult and then they found all this in my skull. My left side is worse than my right and I have these lumps like horns on my forehead too. It has affected my emotional health and physical health too. To me having this is a terrible thing to have with the impact it has on my life. Is there anybody out there suffering the same as me.