Hypermobility Spectrum Disorder (HSD), and Hypermobile Ehlers-Danlos Syndrome (hEDS) are members of the Ehlers-Danlos Syndrome family of connective tissue disorders. There is, unfortunately, no specific genetic testing for these common disorders. Other types of Ehlers-Danlos, under the recent new classification, do have specific genetic tests. The so-called Benign Hypermobility Syndrome may not be so “benign” after all.
Benign Hypermobility Syndrome is frequently associated with joint pain, fatigue due to “mild” sleep disordered breathing, blood pressure regulation (POTS), gastrointestinal issues like Irritable Bowel syndrome, headache, Hashimoto’s thyroiditis, and Pseudotumor or Idiopathic Intracranial Hypertension. It’s also been related to endometriosis and polycystic ovarian syndrome. While not every patient experiences each condition from the list, the instance of even just one proves that ‘benign’ is quite the misnomer.
Faulty Name Leads to Faulty Care
Including ‘benign‘ in the disorder’s name is problematic for the patient. It can mislead them, giving them the impression that it’s not a harmful condition. And, perhaps even more concerning, it lowers the perceived severity of the disorder, which may lead patients to not deal with it as quickly as they should or disassociate their symptoms from their actual cause.
The ramifications of the [mis]label extend far beyond just misleading patients. Labeling the disorder as ‘benign’ also implicates the care that patients are able to access. It allows many insurance companies to deny payment for the tests designed to get to the root cause of many of the symptoms related to this disorder. If it’s benign, it won’t hurt you, so why should insurance cover it? Uncovered tests lead to undiagnosed symptoms which leads to the wrong treatment or no treatment at all. And with a disorder like this, where so many of the symptoms — headache, neck and joint pain, and fatigue — can be disabling to patients, the neglect and lack of proper care can catapult into additional, more serious conditions.
The misconceptions of Benign Hypermobility Syndrome don’t all stem from the label ‘benign’. The disorder formerly belonged to clinical geneticists. However, it is a lot easier these days to find a gene that links to some disorder, than to find out exactly what that gene does or even its importance to the quality of life of patients who have it. And except for some relatively rare exceptions, labeling something as a “genetic disorder” stops the thinking process about trying to help change the outcome of that disorder for the patient.
And so with the false impression created, the cries of patients of benign hypermobility syndrome often fall on deaf ears. They are shuffled from doctor to doctor as psychosomatic, symptom amplifiers, cooks, or worse. They can be teenagers who are referred to psychiatrists, twenty-or-thirty-or-forty somethings who are labeled “depressed.” Frequently, they are treated with unnecessary surgery and prescription drugs, providing a band-aid to a condition that needs much more.
The Squeaky Wheel Drives Proper Treatment
If you are experiencing symptoms of Benign Hypermobility Syndrome, know that there is light at the end of the tunnel. The path through the tunnel? Arm yourself with the right information and continue to push to be heard.
Medicine doesn’t have all the answers yet, but we are learning more and more about ways to help. Given that so many patients with Hypermobility Spectrum Disorder have autoimmune-related problems, you should take steps to try to decrease unnecessary stimulation of your immune system. Since the immune system is frequently stimulated by bacteria and food getting through a “leaky gut”, it stands to reason that a diet based on an Autoimmune Protocol Diet (pretty restrictive, but gluten and milk-products free as well as hormone and antibiotic free) might help you.
Other tips? Avoid overstretching your joints, seek treatment for your “mild” sleep disordered breathing, avoid unnecessary drugs and surgery, replace choline and other dietary deficiencies with appropriate supplements, and treat other problems associated with this “benign” condition as they come up.
But above all, be your own squeaky wheel. Keep pushing, be adamant, and don’t take ‘benign’ as an answer.
