22 year old son,just diagnosed!?!?

Hello Wensdi and welcome to our group. First of all, oh my gosh, this must be so overwhelming for you. Even though CC is a rare disorder, it comes as an even greater shock when the patient is so young. The members of this board are exceptionally caring and knowledgeable. This, in my opinion, truly is the most informative source you can look to for information and guidance. I know it was for me when my husband was diagnosed nearly a year ago.

It would be helpful if you could provide some information about your son’s diagnosis. Where is the CC located, what were his presenting symptoms, how was it diagnosed and by whom?

I’m sure you will receive some very helpful information from our members about how to proceed, nearest medical centers with expertise in CC, and ideas for seeking treatment when medical insurance is not available. The doctors that do not specialize in treating CC tend to use a palliative, “just deal with it” approach and may not even be aware that there are more and more effective treatments surfacing all the time. It is really important to seek a knowledgeable doctor that treats many cases of CC. All my best to you and your son.

Debbie