What is JHS?
Before I start writing about living with JHS, it makes sense to explain what the condition is about, whether it is called Joint Hypermobility Syndrome (JHS), Hypermobility Syndrome (HMS) or Ehlers Danlos Syndrome Hypermobility Type (EDS-HT). Most people have never heard of any of JHS/HMS/EDS-HT and those who have, often don’t understand it to the full extent, even doctors.
Previously JHS/HMS and EDS-HT were thought to be different conditions, with EDS-HT being a more server version of JHS/HMS, however doctors have now agreed that they are the same condition or that there is very little difference between then that the treatment and management is the same. For the sake of this blog, I will refer to it as JHS.
JHS is a connective tissue disorder, where a person has faulty Collagen. Although this condition is hereditary and you are born with it, it is not something that is present since birth or that you suddenly develop. Symptoms tend to start showing during adolescents, when people stop growing. From then on, it is a gradual process of developing symptoms.
Collagen is a protein based material that has the job of allowing the body to move. It is present in the joints in the ligaments and tendons, muscles, organ tissue and skin. Collagen acts as an elastic band, allowing the body to move and stretch, stopping it from stretching too far, then going back to it’s original shape. In people with JHS, the collagen does not stop the movement before stretching too far, making it unable to revert back to it’s original shape. The tissue can remain stretched and stretches further with every movement, making the joint lax and leading to dislocations and subluxations. Once the joint has dislocated once, it means that it can dislocate more and more, with the ligaments continually stretching, meaning that sometimes it can snap altogether.
Lax and unstable joints make the body wobbly and weak, making everyday things nearly impossible. With acts like standing up being a problem when you have joints so wobbly that they cannot take your weight.
With collagen also present in organs, these too can have similar problems as joints, particularly those involved with movement e.g. bowel and intestines. Just like our joints, these too can stretch and become lax, making it difficult for them to function properly. When the same thing happens in more important organs, such as the heart, this can cause serious problems! The presence of collagen in the skin makes it stretchy too. It becomes soft and fragile, prone to tearing and poor at healing, meaning that scarring is common.
Because the body is unstable and wobbly, our muscles have to work harder to keep everything in place and allow us to move. This requires a lot more energy that is usually needed to simple tasks, meaning that many people with the condition suffer from exhaustion.
The biggest problem with JHS is pain. People may look fine on the outside, but suffering immense pain on the inside. They can have good days where they can walk and get everything done without any interference from their body, but also bad days, where some people can’t even get out of bed. This means that people with JHS are often seen on their good days and people cannot comprehend what they go through on a bad day. JHS is an invisible illness. Something that people cannot visibly see, making it difficult for them to understand that something is wrong.
Finally, JHS is a complex condition that can have a huge impact of a persons every day life. But it is these complexities that also mean that JHS has high comorbidity with other conditions such as Fibromyalgia, heart murmurs, strokes, scoliosis, insomnia, hernias and arthritis.
This blog is aimed at helping people understand JHS better and the difficulties people living with the condition go through in their daily life. Hopefully we can raise awareness for the condition.
Let’s make the invisible, visible.