3-Methyl Crotonyl-Glycinuria

Do you suffer from this genetic metabolic disorder or are you a currently treating people with it or researching it?

I was born with 3-methyl crotonyl glycinuria, an extremely rare genetic disorder which affects protein metabolism. Because the disorder is so rare there is very little information about treatment, symptoms and research. I would therefore be very interested to hear from you if you have this exact disorder.

I do currently have regular consultations and blood tests from a consultant in a UK based hospital, I am however the only person they have ever met with the condition. I have found that from ages 0 – 35 years the condition has little or no affect on my daily life. But as I am getting older it seems to be causing some issues. I am therefore keen to work out a program of health and wellbeing that will allow me to maintain good health during the second half of my life and manage the condition well.

Get in touch ›

I would love to hear from you if you also have this condition or are a doctor or researcher who has experience with it. You can contact me by emailing juliandeverell@icloud.com or by completing the following form.