Focus on: The HMSA

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What does HMSA stand for?

The Hypermobility Syndromes Association.

This very small charity is very close to my heart as it deals with the illness that my youngest daughter has.

The syndrome that she has is the hEDS, which stands for hypermobile Ehlers – Danlos Syndrome.

hEDS, is an illness which unfortunately is degenerative.

The charity supports families with the following conditions:

Hypermobility Syndrome Disorder

Ehlers Danlos Syndrome (all forms)

Marfan Syndrome

Osteogenesis Imperfecta

Sticklers Syndrome

Pseudoxanthoma Elasticum

and all other Heretible Disorders of the Connective Tissue (HDCT)

The charity provide help and advice for all these people.

The HMSA is run by qualified professional and trained volunteers.  Alongside offering support to all those affected by the hypermobility syndromes we provide publications and information/education programmes for Schools, colleges and health  professionals.  All information produced is evidence based and accredited by NHS Englands information standards, ensuring that both you and those supporting you can have confidence in its accuracy.

Most people with hypermobility syndromes are affected very mildly.

However some Heritable Disorders of the Connective tissues are associated with complex and multisystemic problems.  There is also growing awareness  that some people with the milder variants of the syndormes have added complications beyond hypermobility and pain, that include autonomic disturbances.

What is Hypermobility?

This is the term used to describe the ability to move joints beyond their normal range of movement.  Joint hypermobility is common in the general population.  It may be present in just a few joints or it may be widespread.

It is most common in childhood, adolescence and in females.  it tends to lessen with age.  In most people joint hypermobility is of no medical consequence and commonly does not give rise to symptoms.

For a small percentage of the population hypermobility may be associated with joint and ligament injuries, pain, fatigue and other symptoms.  Hypermobility can also be a sign of a more serious underlying condition, which are often passed down through generations.   These conditions are known as Heritable Disorders of the Connective Tissue (HDCT).

The most common of these is Joint Hypermobility syndrome or hypermobility spectrum disorder which used to be thought by many experts as the same spectrum as hypermobile Ehlers Danlos Syndrome (hEDS). This is what my daughter has.

It is important to appreciate that each HDCT has its own differing symptoms and complications as well as also sharing a broader commonality.

What Happens?

In HDCT’s the bodies connective tissue proteins that give the body its intrinsic toughness are affected.  Apersons joints are lax because they have looser  more stretchy connective tissue, particularly their ligaments and tendons (soft tissues.)

Hypermobile people can easily injure soft tissues around joints because their joints can easily twist or over extend and can partially dislocate (‘sublux’) or in some cases fully dislocate joints.

Whilst the majority of people recover from injury (albeit slower than others), others only partially recover, or continue to repeatedly injure parts of their body.

The skin and internal organs may also be affected as connective tissue is found in all parts of the body.  For some this can cause additional problems involving the gastrointestinal system, the autonomic nervous system and bladder function.

The severity of symptoms, the joints that are affected and the level of pain and fatigue experienced by those with hypermobility syndrome can vary from day to day.  This can interfere with the activities of daily living, schooling or work.  The associated pain can be widespread and persistent and can often be confused or misdiagnosed as Fibromyalgia.

Severe fatigue is a very common symptom.

source: HMSA

 

 

2 thoughts on “Focus on: The HMSA”

  1. HMSA is doing a great job by helping the hyper mobility patients as most of them are hampered by the lack of correct information as often are mislead by so called experts who lack experience in treating autonomic disorders.

    I also would suggest that you keep a directory of the best and experienced doctors and professionals verified by you, as patients need this information the most.
    John Gatesby recently posted…Do I Have Postural Orthostatic Hypotension Syndrome(POTS)?My Profile

    1. Yes I know. They do an amazing job. Just wish there was more awareness from medical professionals of some of the other issues. Thank You for your knowledgeable comment. Kaye x

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