My Rare Condition.

I hope everyone is doing OK.

This is one blog that is hard for me to share as it is new and I’m trying to wrap my head around the diagnoses still, but this is my life. If you are a follower of my blog you would know I was admitted to hospital last week, as my GP was fearing the worse. Now to explain the fear that lead to the hospital that gave me my diagnosis.

It started with me going to the GP due to my head. I have been experiencing a lot of different issues which they believe are all connected to my head, but what’s caused all the issues they can’t explain. Then I experienced the worse issues I could have ever imagined, and that is indents in my scalp.

It honestly feels like my scalp is caving in on its self. My GP had no idea what was going on as I never had this before, so she rushed me to the hospital, The Doctors there had never seen it before. They ran bloods, did CT scans, 30-minute obs, every Specialist got called in the hospital till they got a Specialist who knew what it was.

The Diagnosis is Cutis Verticis Gyrata (CVG for short) it is where the scalp thickens and deep folds begin to form in the scalp it is described to look like a form of the brain. it happens in 0.026 in 100,00 of woman, and 1 in 100,000 men.

They are unsure of the underlining reason behind why I have it, so I will be tested more. There are so many unanswered questions, so many emotions, as well as the unknown.

At the moment I’m just trying to get my head around the diagnosis. My days are hard as I’m scared to touch my head, I don’t like the feeling and every day it’s growing. I don’t know what the future holds, but for now just getting through each and every day is the best I can do.

Hope you enjoyed, and if you have CVG I would love to hear from you.

6 Replies to “My Rare Condition.”

  1. Sometimes life makes no sense. I feel for you, and certainly I hope only the best for you . One last thing I have more than you can imagine and every time I thought I used up my last chance and that life was over, inexplicably I got another chance although not religious, I’m spiritual and I call things like that a God thing. No reason you don’t have a God thing coming your way. 👍

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