HI all, wanted to share my experience from yesterday. For those who's read my previous post, will know that I was recently diagnosed with behçet's disease, and my daughter of 7 years old has been really sick for over 4 years. She had an appointment yesterday at the evelina hospital. I really thought that after 4 years of investigation she was going to be diagnosed with behçet's disease. Especially since they have so much evidence now. So just a quick reminder of what they already know. I have behçet's disease. She has the HLA 51 gene, she has mouth and gentile ulcers, she has knee and ankle inflammation, has sever abdominal pain, has only diahorea stool with blood and mucus for the past 4 years. Her inflammation markers CRP is always higher than normal, 24 and above. She always gets red eyes. She suffers from terrible fatigue and nausea and recently dizziness, frequent nose bleeds. And what ever else I may have forgotten to mention. All of these symptoms they have seen for themselves. So I was really disappointed when not only will they not diagnosed her, they keep saying were getting closer and closer but when I ask them to referred her to the royal london hospital behçet's center, they told me NO, as they don't believe that? That would be the best place for her to be, they first said that one of the professor who originally diagnosed me with behçet's cannot diagnosed without they say so of a rheumatologist. And can I just add, she did diagnosed me. Also that the behçet's center was a charitable organisation and was only there for financial reasons😠😠 that they would not have the professional care to care for my child, and in either way it's the rheumatologist who leads the way in behçet's disease. I explained that I was informed at my appointment at the behçet's center to have my daughter referred to them as hey have excellent paediatric specialist who deals with behçet's in children, he went on to tell me that this cannot be the case as he believes they are only 2-3 paediatric in this country and noneof them are at the behçet's center. I was so furious as after all the evidence and all these years of doing test after test on my daughter they still refused to diagnosed her. Insted he want to wait as he now wants to do an mmri scan. They don't seem to understand the amount of stress they are putting on me, wich we all know what that dies in our illness. I'm going to go back to her GP and ask her to do the referral. Just wanted to share that with you all.