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My name is Yolanda Gomez, I am 24 years old and been living my life to the fullest. I was born with a very rare disease called "Immotile Cilia Syndrom". From the day i was born I was in the hospital most of my childhood, I always had pneumonia and common colds. The doctors could never figure out why I was always sick and why my head/sinuses were always full of mucus. I saw doctors, specialist, therapist ect. for years, every doctor had a different diagnosis which always led to "She'll grow out of it'. I never did, as I got older my hearing got worse, headaches were a daily pain, nose bleeds severl times a week and a constant runny nose and horrible cough. By the time I was 11 years old, my mother had found a ENT Specialist named Dr. Jory Kaplan. He started test on me right away as well as several surgeries trying to understand what was causing all of this. After several surgeries and researches later Dr. Kaplan discovered I had a rare disease that only 6 others in the U.S. had at the time. He said the built up of mucus and bacteria over the years had decade all my bones in the ear and created holes in my ear drums, which led to the hearing loss. I had Double Mastoidectomy's when I was 12 and several cleaning and repairing surguries after, which still meant I had to wear Hearing Aids. On top of it all, I am deathly allergic to all Opiets, Mycins and Benzodiazepines. Over the years this disease has caused my immune system to fall lower and lower which made me more vulnerable to all infections and viruses. I was diagnosed with Shingles at the age of 17 and am prone to G.E.R.D. I have to take daily pills that are used for colds and asthma (which I dont have either) to help with my sinuses, headaches and shortness of breath. Studies say that I will only get worse as I get older and may have to be on oxygen by the time I'm 50. I hate taking so many pills but I have no other resources since there is no cure for my disease and they stop studies on anyone over 18. I would like to find another person with my disease to talk with and see if they have been through the same stuff I have and how they deal with it on a daily basis. Even with it all I am still a very happy person and try to be as active as I can and live as much of a normal life I can. I have great Family and people in my life and I try not to dwell on myself when I know there are so many other people out there worse off than me. I give a great Thanks to my mom for always taking care of me as well as Dr. Jory Kaplan and never giving up on me.