Friday, September 25, 2009

Hypermobility Myths Dispelled

There is so much material out there detailing every possible facet of Hypermobility Syndrome, so why, one may ask, have most Doctor's not heard of it and/or continue to ignore it? There are four major reasons why HMS is not taken seriously, but as you will see, all of these reasons can be easily dismissed. There is no excuse to be ignorant of HMS, it is a real threat affecting the lives of hundreds of thousands of individuals, so its time to do something about it – lets start spreading awareness and hope!

1) Myth - Hypermobility is a benign condition, so there is no incentive to diagnose it.
Truth - When it was first identified in medical literature in the late 1960s, Hypermobility Syndrome was named 'Benign Joint Hypermobility,' because it was first noticed in patients who were 'double-jointed' but otherwise appeared to be perfectly healthy. Numerous studies in more recent years have linked HMS to very serious disorders such as fibromyalgia and osteoarthritis in addition to its threat of debilitating joint pain. Despite all the evidence to the contrary, Hypermobility is still considered as more of an oddity, a parlor trick, than a serious medical condition.
When I was struggling with finding a diagnosis, I visited the Emory Hospital Pain Management Center in Atlanta, GA which is one of the most prestigious pain management centers in the south east. I was seen by Dr. Baumann, who was named one of Atlanta's Top Doctors for pain management in the August, 2001 edition of Atlanta Magazine. When I arrived I had already received a positive diagnosis of hypermobility, but when I mentioned this, the doctor immediately dismissed it. She told me that I had 'myofacial pain syndrome' (which is just a medical descriptive term, rather than diagnosis, of generalized muscle pain). She told me that there was nothing that could be done, and that I would 'just have to learn to deal with my condition, like the way a person with diabetes or obesity manages their condition.' This comment illustrates that even medical professionals at the top of their fields can be ignorant of the fact that Hypermobility severely affects the health and lives of many individuals. If Dr. Baumann, an award winning doctor, is misbelieving of the significance of HMS, what can be expected of the average family doctor, pain management specialist or rheumatologist?

2) Myth - Since Hypermobility Syndrome is a genetic disorder and therefore cannot be ‘cured’ either through surgery or pharmaceutical treatments, there is no money to be made in researching or treating the disorder.
Fact – The misdiagnosis of patients with Hypermobility Syndrome costs hospitals, doctors, and insurance companies countless dollars due to unnecessary tests and being sent to superfluous specialists. Most Hypermobile patients are bounced from doctor to doctor, and specialist to specialist for months, and sometimes years on end in search of relief. In the process they often miss work and have very costly yet unnecessary tests done, draining the money and time from an already overloaded medical system. If doctors and specialists were to diagnose HMS proactively, they could save their patients from pain and save themselves money in the process. In just five minutes, with a simple test of a patient’s flexibility and family as well as personal health histories, a definitive diagnosis can be made without costing a dime!

3) Myth – Hypermobility Syndrome is just a Women’s Issue. These healthy young girls complaining of inexplicable pain just need to toughen up and stop whining!
Truth – while HMS affects 5% of the female population, it affects men as well. Patients should be respected and trusted, it takes courage to ask for help and terrifying to be admonished by the very people who are supposed to help you. Also, another problem is that many girls with Hypermobility perceive the disorder as an asset rather than a liability. Hypermobility causes certain ‘feminine’ body characteristics, such as silky-smooth porcelain skin, elongated and dainty limbs and digits, and tiny wrists and ankles. Also, the natural flexibility that Hypermobility causes makes many girls highly desired by gymnastics, cheerleading, and dancing coaches, activities in which they excel do to the competitive edge their inherent flexibility and range gives them.

4) Myth – Hypermobility is so rare, one could not really be expected to have heard of it, let alone be able to recognize it in others.
Truth – HMS is extremely common, Ehlers-Danlos Syndrome Type III Hypermobility Syndrome alone affects 5% of all women! Almost all of us has at least one ‘double-jointed’ friend who has freaked us out or entertained us with their abnormal flexibility and contortions. Also, many models and actors/actresses are Hypermobile too – two of the affects of the collagen imbalance that causes HMS are silky-smooth skin and long, lean, dainty limbs, which gives them a natural advantage on the red carpet. See the pictures below of celebrities who are hypermobile and may not even know it!

Below - Allison Harvard (Runner-up America's Next Top Model Cycle 12), Jessica Stroup (Actress 90210), Demi Lovato (Actress Camp Rock, Singer), Meaghan Jette-Martin (Actress 10 Things I Hate About You TV), Kevin Jonas (Musician The Jonas Brothers), Taylor Mommsen (Actress Gossip Girl), Mary-Louis Parker (Actress Weeds), Jennette McCurdy (Actress iCarly), Ashley Argota (Actress True Jackson), David Caruso (Actor CSI:Miami)

A Call for Awareness

There is a pathological family that falls under the discipline of Rheumatology, known as Heritable Disorders of the Connective Tissues. The individual pathologies vary widely in both severity and symptoms, and include disorders such as Marfan Syndrome (MFS), Ehlers-Danlos Syndrome (EDS), and Osteogenesis Imperfecta (OI). One symptom that each of these disorders present with is joint hypermobility. It is advantageous for rheumatologist, then, to look for joint hypermobility first in all of their patients; if the patient does not display hypermobility then the doctor can safely rule out an entire class of disorders, and if the patient is in fact found to be hypermobile, the doctor will have a very specific idea of what is wrong and the course of treatment needed. The current methods employed to diagnose disorders such as MFS, EDS, and OI are both costly and time consuming – many tests such as blood work, X-rays and MRIs must be repeated to look at tighter and tighter parameters. Since the cause of this family of disorders is genetic, skin biopsies are often needed to make a definitive diagnosis, a process which is costly for both patient and doctor. There is, however, a much more efficient and expedient way to make diagnoses for these disorders; upon determining that a patient is hypermobile, a thorough family and personal health history, which requires no tests and costs no money, can provide enough data to come to a decisive and final diagnosis, without the need of costly tests or wasting any time. The diagnosis of Connective Tissue Disorders today is one of a process of elimination, one that proves costly and grossly inefficient. Ehlers-Danlos Syndrome Type III alone affects 5% of the female population, causing an immense drain on the healthcare and insurance systems as patients are bounced from doctor to doctor and from test to test for months, or in many cases, years. The manpower and money that could be saved by being proactive rather than reactive in the diagnoses of Connective Tissue Disorders is immeasurable.

The strain caused by these disorders is not only felt in the healthcare or insurance communities, but in the workforce and social services as well. Studies show that Connective Tissue Disorders have a significant impact on the quality of life of patients; many are unable to work full-time or consistently, causing many patients who have been unable to receive a diagnosis or reliable treatment plan to rely on the unemployment system and other social services in order to provide for themselves and their families. Once again, the scale of the amount of tax dollars that could be saved by being proactive and spreading awareness about hypermobility in the medical community is impressive. Not only would a focus on diagnosing hypermobility save countless dollars from being spent, but the test for hypermobility itself costs absolutely nothing to perform. The test for hypermobility is known as the Beighton Scale and/or the Brighton Criteria. These tests require the patient to perform a series of movements with various joints to see if/how many of those joints exhibit abnormal or increased mobility. This test takes less than 5 minutes to perform, does no harm to the patient, and costs nothing to perform for the doctor and insurance companies. In 5 minutes more can be determined in the diagnosis and prognosis of a patient than can be learned in months or years given the current stratagem of the medical community. In the same vein, the quicker that a diagnosis can be reached, the shorter the recovery time for the patient, and the faster they can go back to their lives and rejoin the workforce – saving countless dollars in insurance bills, treatments, and unemployment and/or workers compensation payments. Furthermore, as Connective Tissue Disorders are heritable pathologies, so once one member of a family is given a diagnosis, it makes the diagnosis of other family members exponentially easier, ensuring that the healthcare system will not be burdened with subsequent generations of patients, as preventative actions can be taken.

Once again, the medical community has nothing to lose and everything to gain by shifting its focus towards the diagnosis of hypermobility in patients. Rheumatologists are not the only healthcare professionals who could benefit from testing for hypermobility; a vast majority of patients suffering from Connective Tissue Disorders are seen by orthopedists, gynecologists, physical therapists, psychologists, and pain specialists. The burden placed on the healthcare system, then, is as wide reaching as it is heavy. A recent study shows that less than 10% of hypermobile patients are correctly diagnosed by their primary care physicians. Incorporating a discussion of hypermobility into the common curriculum for general practitioners, then, would be hugely beneficial; the testing for hypermobility requires neither any testing equipment nor specialized expertise, therefore, general practitioners could easily screen for the trait, preventing patients from having to seek the care of specialists in the first place.

In conclusion, screenings for hypermobility would be easy and costless to implement, and would be immeasurably beneficial. Such screenings would eliminate wasted time, money, and testing by doctors and hospitals, and relieve strains on insurance companies, as well as unemployment, disability pay, and other social services that demand a high amount of manpower as well as tax dollars. Hypermobility may at first appear as an insignificant phenomenon, and one that is easily overlooked; however, it is just as easy to recognize as it is to ignore, and once spotted, its benefits are as far reaching and immediate as they are drastic.

Chelsea Smith

Hypermobility Hope

Friday, September 4, 2009

Dr. Brad Tinkle

I had the distinct pleasure of having Dr. Brad Tinkle comment on my recent article out in the Fayetteville Observer. Brad Tinkle is arguably the most influential advocate for Hypermobility Syndrome in the US today. His book, Issues and Management of Joint Hypermobility: A Guide for the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome, is extremely helpful - it details a wide range of symptoms related to the disorder, and personally helped me make sense of my medical history - and is availible at Please read his post, below.

Brad T Tinkle, MD PhD - Chelsea's story is a sad one indeed and unfortunately repeated everywhere too many times. We need to advise healthcare workers and families that joint hypermobility is not a "gift" to be exploited especially in young athletes, and we had better work towards making a long term difference in their lives by re-teaching those to use their joints within normal limits.
The Ehlers-Danlos National Foundation recognizes the hypermobility syndrome as the same as the hypermobile type of Ehlers-Danlos syndrome and would welcome those seeking support or information.