I am 44 years old and I live in Bétera, in the Valencia region of Spain. I am diagnosed with an ultra rare disease that my doctors call Cardiac Glycogenesis Type XV. IamGSD uses the term GSD15.

Unusual amongst muscle GSDs

It is unusual amongst the muscle GSDs, as it is one of the few which results in the profound depletion of glycogen in the cardiac and skeletal muscles, whereas most GSDs leave an excess of glycogen.

I was finally diagnosed at the age of 41, after several years searching for a diagnosis, when they did a heart biopsy and saw that I had unusual deposits in the walls of my heart.

High-tech monitoring

Currently my symptoms are as follows: muscle weakness, daily dizziness, instability and cardiac arrhythmias. 

I have a Holter monitor implanted subcutaneously (under the skin) in my chest. This monitors the electrical signals from my heart. These are sent continuously to the hospital where the arrhythmias which I suffer are reported. They can control the device remotely.

The condition seems to be progressive

My heart is inflamed by the abnormal deposits and, little by little, those deposits are going to increase. There is as yet no treatment to stop this process.