I'm making CVG support group!

[CVGguy69]

Hello everyone!

22 male here. I just found out i have a pretty rare skin condition called Cutis Verticis Gyrata (CVG).

Since there is very limited information about this condition online, i will be making a support group where everyone with the condition can discuss feelings, progression, information, and all that stuff, so we can help eachother out with first hand information.

I will be making the group on snapchat. If you want in, drop a comment here with your username, or send me a private message and i will add you.

 

For future readers; I will check my inbox often and over many years so don't hesitate to write.

[ciaus]

Sorry to hear, I know what its like to be hit with a rare disease diagnosis, I have a scarring alopecia (LPP) on my scalp,  fortunately it has been in remission for some years and was relatively mild even when it was active.

Like you say in your post this is not a well known condition, thought it would be helpful to give a brief description here in case someone comes along that maybe knows someone with the symptoms but doesn't know what its called.

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Cutis verticis gyrata (CVG) refers to deep folds on the scalp that look similar to the folds of the brain. It occurs more commonly in males, and most commonly develops after puberty, but before age 30. It may occur alone (isolated CVG) or in association with a variety of underlying conditions or treatments, including neuropsychiatric disorders, eye abnormalities, or inflammatory conditions.