Hi bunny am in the same situation I feel for because I know what we go through. I feel like we are the forgotten once. I wish their was a way to communicate with you because I feel alone in this matter. I am from east Africa and as you know it's more common in poor countries and I have had family tell me to take a trip back to my country because the doctors are more familiar with it. Also I don't know if it's true but they say they have better medication. Please respond back and let me know of any support groups of people that are dealing with the same thing.