Hypermobility Syndrome, AKA Joint Hypermobility Syndrome (JHS), Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT), Hypermobility Spectrum Disorders (HSD)

January 19, 2017

Quick Info (2016)

The content in this post is outdated. There are new updates to the current understanding of joint hypermobility disorders. Please read this post

I am keeping this post and the content as a historic record of our understanding of the disease until 2016. 

1. What is Hypermobility Syndrome? Is it some kind of a rare disease?

Hypermobility syndrome (HMS) is a hereditary disease of the connective tissues that affects the whole body of a person, particularly the joints. HMS is now considered by many experts to be the same as Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT), differing only in the variations and severity of presentation.

Ehlers-Danlos Syndrome or EDS is a group of connective tissue disorders (connective tissues includes collagen and other such proteins) that are known as Heritable Disorders of Connective Tissue or HDCTs. These are genetic and not auto-immune in nature, unlike lupus (SLE).
However, if you are in India, you are most likely to receive a diagnosis of:
  • EDS only if you have had joint dislocations, and 
  • HMS or Benign Joint Hypermobility Syndrome (BJHS) if you have particular kind of joint problems (pain and ligamental laxity) without dislocations. 
HMS manifests more in women possibly due to hormonal reasons, although is genetically prevalent in both the genders. HMS is not a rare disease according to current thinking, but is difficult to diagnose because of the highly variable presentation in the form of seemingly unrelated multiple diseases in a person leading patients in India spend their lives without a diagnosis and proper treatment.

What the person feels: Often a person who has a milder form of this disease and no joint dislocations, fails to qualify as a textbook case of EDS and is not diagnosed in India. But the person, in spite of outwardly looking perfectly healthy, knows there is something really wrong with them. Their joints and muscles hurt. Their whole body hurts. Their "stomach" is often "upset" - which causes "acidity and heartburn", vomiting, loose motions, or constipation. They may have allergies. Their teeth trouble them. They may have headaches, bad back aches, eye problems, palpitations, chest pains, jaw pain, dizziness, severe fatigue, embarrassing problems with urination and bowel movements, and a whole multitude of illnesses. They feel anxious. They cannot understand why in spite of all the care they take they are so tired and so easily injured. They may feel, why me, because they seem to have landed with an unfair share of illnesses. They feel lonely and isolated because no one, including the doctors they seek help from, really understands or believes them.  
What others feel: It is equally common that other close people around this person thinks they are overreacting to normal aches and pains. Often they tell the EDS person that they should exercise or eat this or do that - and try to building stamina and good health. Others feel that it is being super anxious that makes the person fall ill so often. Most people - friends, colleagues, neighbors, may disbelieve the EDS person - they do not look as ill as they say they feel. And they appear to be shirking responsibilities, activities, social engagements and chores with flimsy excuses of illnesses that doctors do not validate.
Rings a bell? Someone you know?
(Read more herehereherehere and here)
2. Is Hypermobility Syndrome the same as Joint Hypermobility Syndrome? 

Yes, Hypermobility Syndrome (HMS) is also known as:
  1. Joint Hypermobility Syndrome (JHS)
  2. Benign Joint Hypermobility Syndrome (BJHS)
  3. Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT or H-EDS)
HMS is also called just EDS nowadays since the existence of EDS-HT as a separate disease entity from classical EDS is being questioned. 

(Read more here)

3. Someone I know has been diagnosed with Joint Hypermobility. Is it the same thing as Hypermobility Syndrome? 

No, joint hypermobility (JHM) just means that there is an abnormal range of motion at a joint. It does not necessarily mean there is a connective tissue disorder. Often children with joint pains are diagnosed with JHM that leads alarmed parents to find this blog. JHM is not the same thing as JHS, but the presence of joint hypermobility is one of the criteria of diagnosis of HMS/JHS/HEDS.

(Read more here


For more information on this condition, its management and the personal experiences of people who have it, please browse through the posts below and links on the sidebars. If you have any questions, please use the contact form in the sidebar. Thank you for visiting my blog.