my daughter was diagnosed wit lipoid proteinosis when she was 7. she is now 14. it began the moment she was born her cry was very hoarse and i could barely hear her. as she got a little older she developed sores on the inside of her lower lip. it looked like cold sores. they were white and hard. her doctor told me it was because of her pacifier and once she gave that up they would go away. they didnt. i told the doctor about her hoarse voice. he said she isnt using her true vocal folds and sent her to a speech therapist. she went to speech therapy where they tried to teach her to speak in a light " good" voice, since she was 1 1/2 . after about a year of that the doctor said it was acid reflux and did tests on her for that. it came back negative with only slight reflux, so they put her on medication. still the hoarse voice continued and she was eventually sent to an ear nose and throat specialist. he sent her to another ent and that doctor did test upon test. at the age of 7 she had a biopsy done on her lip and vocal cords and trachea. thats when they discovered it was lipoid proteinosis. she hasnt had any seizures (knock on wood) but she does have tiny little scars all over her face and still to this day gets the sores on the inside of her lip. does anyone out there know anyone who has this rare disease?? i have never talked to anyone who knows of anyone with this and i would like to connect to someone who has at least heard of it. thank youReply Follow This Thread Stop Following This Thread Flag this Discussion
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