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.
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