This is probably the most frequently asked question of all, and in my experience is asked with such genuine care for me that I find it really hard to answer it truthfully face to face. The answer is no and if that is all I say without explaining, then I watch eyes that roll or hear replies around the space of me not being open to trying new things or that I am giving up to the “disease”. So to answer this here will hopefully explain it in full and my hope is that people will hear the answer and understand that I am not doing either of those things at all.
First off all, EDS is not a disease. It is something that I was born with and is caused by a faulty gene. No one can catch it and I can’t be cured from it.
Secondly (and this is the thing that understandably most people can’t get their heads around) is that it is a structural problem. In other words it is not that different to being born with a leg missing. That sounds crazy, but the thing is that 72% of our bodies are made up of collagen and each and every molecule of my collagen is faulty. Each molecule is missing a piece, …and each and every molecule is missing the same piece. Collagen molecules are building blocks of tissue, so my blocks, (or bricks) are not very strong. Maybe think of it that the bricks that make up this house are made of polystyrene instead of clay like yours are (and mine should be).
So without meaning it, when people suggest that I take collagen tablets (or cream etc), it is like suggesting to someone with a missing leg that by swallowing a leg might help… I know, that sounds silly. But the reality is that there is absolutely nothing that can change the bricks in our body. They are what they are… eating clay bricks won’t turn my polystyrene bricks into clay.
It means that supplements, teas, diets, carrots, super foods and so on … in other words all the things that make a huge difference in healing from all kinds of diseases, is of no use to us with a structural failure that we are born with, whether that be a missing leg or a missing branch of each collagen molecule.
Having said that, I do take a lot of medications, but they are almost all prescription drugs which do things like replace the vitamin D that my body does not produce enough of, pain killers to manage the constant pain, anti inflammatories that keep the swelling from injuries to a minimum and so on. Alternatives medications are wonderful for al kinds of things, but using vitamin D as an example, the levels that I need are fourteen times higher than what is legally available over the counter or in health food outlets.
So thanks so much to all who have asked and care, but sadly the answer to this one is a very clear no.