Kallmann Syndrome Support Group

Hi, my name is Camille. My 18 yr old son was just diagnosed with Kallmanns. In addition to educating myself on the disorder I'm trying to find the best treatment for my son. We've seen one endocrinologist and I was not impressed with her knowledge of Kallmanns or her willingness to address my questions. Does anyone have advice on how to locate a doctor with knowledge of Kallmanns? I'm in the St Louis MO area.

Hi camile, because its a rare condition with a ratio 1:10,000 or 1 in every 10,000 births some doctors are inexperienced handling the condition. But they do have some knowledge about it, up to know kallmann syndrome is undergoing a study, even though it can be inlined w/ other pituitary problems resulting hypogonadism, normally your doctor will prescribe your son hormonal replacements like HCG and testosterone as a treatment and to go to puberty. Other than that kallmann patients manifest other concerns like anosmia, cleft palate, micro penis and so on, it depends on what your son has.