Hypermobility spectrum disorders
What is a hypermobility spectrum disorder (hsd)?
We’re all had that one kid in school that loved to freak out other people by bending their arms, legs, or shoulders in ways that most people can’t. The reason they can do that is usually that their connective tissues aren’t quite how they should be, so they are able to stretch and bend their bodies more than others.
For a lot of people, it’s not a problem. The extra motion they have doesn’t lead to any problems other than irritating other people. It becomes a problem when the hypermobility causes injuries and pain. Hypermobility spectrum disorders can also come with other problems, such as fatigue, heart problems, gut not working properly, bladder not working properly, and anxiety.
What causes hsd?
People with hsd have abnormal connective tissue. In some cases, such as many (but not all) types of Ehlers-Danlos, we even know the gene involved. Connective tissue works like scaffolding to support the body and organs.
What is Ehlers-Danlos syndrome, and what does it have to do with hypermobility spectrum disorders?
Ehlers-Danlos syndrome (EDS) is a specific group of connective tissue disorders that were described over a hundred years ago. Currently it is broken up into 13 different types, of which the most common is hypermobile. Other types include classical, brittle cornea syndrome, vascular, and cardiac-valvular.
How are hsds diagnosed?
HSDs can be one of the more difficult disorders to diagnose. Each person with it will have different combinations of symptoms and each symptom can be mild or severe. Some people develop more issues as time goes on.
Diagnosis starts with a thorough exam and history. The history includes the problems the person currently has, any previous issues, and family history. Many of these people may have family that are overly bendy, but don’t think anything of it. During the physical exam the doctor will be looking for evidence of hyperflexibility, including the elbows, knees, fingers, and spine. They will also look for signs of other issues, which may provide clues to the person’s problems.
There are no lab tests that definitely diagnose hsd. There are some genetic tests for all but the hypermobile type of EDS.
How common is hypermobility?
Due to the difficulty in diagnosis, the actual number of people with hsd is hard to determine. Currently it’s thought from 2-50% of people have some form of hypermobility.
Can a hyperflexibility disorder be treated?
Currently hsd cannot be cured, so treatment is supportive. Physical therapy is a mainstay as it can help with weakness and pain. Pain control is discussed as needed, but most patients will have some chronic pain. Treatment for other problems is addressed as needed for each patient.
There isn’t a specialty for this kind of disorder at the moment. Ideally, the patient’s pediatrician will be the main point of treatment and contact, sending the patient to any specialist, therapist, or counseling they need.
Myths.
“All people with hsd are skinny and lanky.” Nope. While many do indeed look like that, especially those with Marfan syndrome, there are plenty of patients that are of all different shapes and sizes.
“But it’s good to be flexible.” Sure, but only to a point. Accidentally dislocating joints on a frequent basis is too far.
“It doesn’t really hurt, those people are just complainers.” Well, yeah, sometimes they complain about the pain, and that’s fine. Many of them live with pain every single day. And then, when they accidentally injure themselves because their joints don’t hold together they have even more pain. Give them a break.
Bottom line.
Hypermobility spectrum disorders are a real thing that affects more people than we think. If you think your child has this, then ask your pediatrician. They may not be an expert in it, but you can work it out together.
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