Please help us soon. I am missing out on life. I am suffering intensely. Our lives matter too. Thank you for researching this. I am fifty five and not able to socialize in any way now. I had to quit my teaching job.  I am a prisoner in my body watching my husband and daughter live while I can only hear about their adventures. No one should have to suffer this cruel existence. Doctors deny the smell just to get rid if you. You are treated like a non human. I have no human rights at all. I pray for help as another year of pain, humiliation, isolation, fear, anger, depression, anxiety, sadness,hopelessness,  fill every waking moment. I am tired now. I want to live, laugh, share my personality, hang out and every other normal social thing that others take for granted. Human beings need to socialize. This disease is worse than any other. I don’t understand why this gets no attention. If you have this and seek help you are abused and gaslighted.  I beg you to help people like me. We cannot hold on much longer. My heart hearts so much.