Difficulty in obtaining an accurate diagnosis. This is undoubtedly one of the main problems and one that appears from the very beginning. The causes are: lack of knowledge about these diseases, the shortage of doctors or specialised centres and the absence of the necessary information. Delays in diagnosis can in some cases lead to a worsening that could have been avoided or at least alleviated. Limited and sometimes costly treatment options. Little or no research available on your condition. Difficulty in finding doctors or specialised treatment centres. Feeling of isolation.