Unlike store bought jeans, we do not decide or even bargain for a better deal of our genetic make-up. Genes are inherited from both of our parents to compose our DNA.


What is DNA? Let’s go back to science class.

DNA stands for deoxyribonucleic acid, and in simple terms it is the genetic code that creates each one of us. DNA shapes us into the unique individuals we are.

It is in every cell within us, and it lets the cells know when to make protein. DNA is identified as a molecule in a double helix shape, it resembles long twisted structures, much like a spiral staircase.


So genes are made of chromosomal DNA. Genes are what influence our appearance, and they are control how our body is run on the inside.

According to the National Institute of Health, “Mutations in more than a dozen genes have been found to cause Ehlers-Danlos syndrome.” Each type of Ehlers-Danlos syndrome (EDS) is associated with a specific gene that is mutated.

For example, the hypermobility type most often occurs from mutations in either the COL5A1 gene or the COL5A2 gene.

The best way I can explain genetic mutations is to tell you to imagine copying an entire book by hand 20,000 to 25,000 times. Throughout that process there is bound to be an error.

One small genetic error is the reason EDS exists. Unless genetically evaluated or previously determined, there is no way of telling if Mom/Dad or the combination of Mom and Dad could cause such a development in genetic mutation.

Genetics is one of the many cornerstones in science where so much is left undiscovered or better yet, understood. More specifically, there is little known about genetic mutations such as EDS.

That is where James’ Journey comes into play. Our focus is to promote awareness about EDS, as well as promote research. The more we dedicate our time and efforts towards this cause, the closer we can get to one day finding a cure.

We have exciting opportunities that our generation offers: we have the ability to fight for what we believe in, and the right to strive for advancements in science, technology, and medicine.

Join us in the fight for EDS and all those affected by EDS.



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