AUTHOR: Association for Ehler-Danlos and Hypermobility  Syndrome
http://asedh.org/

Proteins in connective tissues give the body its strength and intrinsic resistance. When there is a change in this proteins, results are specially seen in the mobile parts of the body (joints, muscles, tendons, cartilage, ligaments) which are more lax and fragile than they would normally be. The result is joint hypermobility, which makes these structures more vulnerable to injuries.

We refer to the Hypermobility  Syndrome when there are a series of symptomes which come together with the joint hypermobility. These symptomes are different both in the locomotor apparatus (joint pain, sprains, frequent luxations and subluxations, backache, injuries in soft tissues like bursitis, epicondilytis, etc.) and outside the locomotor apparatus (mitral valve prolapse [MVP], varicous veins, fragile and thin skin, uterine prolapse and/or prolapse of the rectum, etc).

Eventhough symptomes may vary and not every patient shows the same injury degree, joint pain and/or muscle pain use to be the most common symptome.

Approximately a 10% of the adult population is hyperlax. This injury varies according to the different ethnic groups and is more common in women. Nevertherless the Hypermobility  Syndrome (Hypermobility  + symptomes) affects only a minority of hyperlax people.

It would probably be more correct to refer to the illness as Hypermobility  Syndromes (in plural), to name a family of conditions related genetically which differ both in the damaged protein and in the damage degree. Consequently, in one end of the scale we could have injuries with potentially serious complications like the Marfan Syndrome or the Ehler-Danlos Vascular-type Syndrome (previously named type IV) and on the other end of the scale we could have what is nowadays known according to evidence Joint Hypermobility Syndrome and the Ehlers-Danlos Hypermobility -type (previously named type III).

Nowadays, most of the specialists who study these pathologies consider that the Joint Hypermobility Syndrome and the Ehlers-Danlos Hypermobility Syndromes (previously named type III) might be the same process.

The Hypermobility Syndrome is an "invisible illness", in other words, people who suffer from it have a normal appearance but usually severe pain and functional limitation come along with them every day. Due to the fact that connective tissues are very fragile, the probability to suffer from any type of injury (luxations, fractures, sprains, tendinitis…) increases even when we perform every day mild activities. During the day, the people affected by this illness must do resting pauses, even after what an ordinary person might consider as a very mild physical activity. Ordinary activities like taking a bath, going up or downstairs, writing, using the computer, meal preparation and, specially, vegetable cutting, can openning, pan holding… may be difficult for those people with a high injury degree.

One of the aspects that is not taken in consideration in the medical consultation and which contributes in the infradiagnosis of the illness is that hypermobility reduces with age. Nevertherless, its symptomes and other resulting complications related to hypermobility use to increase. One of this complications to highlight is secondary ostheoarthritis, osteoporosis with the consequent fractures, and the loss of the balance, specially in older people, which could make them fall over. If these factors are not bared in mind, it is difficult to prevent them properly.

Few doctors do not pay attention whenever they do the diagnosis that hypermobility doesn´t have to show up in all the joints of the patient: some patients are only affected in some joints, not all of them. Some specialists think that even if only one hypermobile joint causes pain or diagnosis inestability, it must still be considered Joint Hypermobility Syndrome (JHS). 

Another common error is to consider that the symptomes appear during childhood. It is true that many people affected have explained how the symptomes started when they already were teenagers or even adults, being capable of having an ordinary life until that moment.
Through our experience, we can affirm that the ignorance of this illness is very common. This unknownledge produces retardation, even of years, in the correct diagnosis, just like the selection of the correct treatments. This factors together with other inherent to the pathology (pain, inability, etc.) have produced many states of frustation, anxiety and depression. As a consequence of this disorder, often depression and anxiety are seen as the main cause of the illness, despite being only its result.

From our Association, we fight to find an improvement on these syndromes therapy, both in its medical and social aspects. We pretend to make aware public opinion, authorities and corresponding organisms about the multiple disabilities and manifestations of the syndromes which may appear.

To know is to understand and, eventhough there is still a long way to go, understanding these conditions makes progress. The knownledge adquired means helping other people affected to live along with the illness and, consequently, to achieve a better life quality. 
NB: Joint mobility is classified with the number 14.790 in the Berlin Nosological Classification, "International Nosology of Hereditable Disorders of Connective Tissue".

To read the complete essay in the Association for Ehler-Danlos and Hypermobility  Syndrome website:

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