Friday, September 25, 2009

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 Amazon.com. 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.

Monday, August 31, 2009

Contact

If you have questions about your personal health in either diagnosing or dealing with Hypermobility Syndrome, please feel free to email me at elsesmith@gmail.com. I would be happy to answer any questions I can, give referrals to doctors, and send information packets to those who are interested.
As always, love and hope,

Chelsea Smith

New Article on HMS in the Fayetteville Observer

Hi everyone! Please check out my new health feature article on Hypermobility Syndrome in the Fayetteville Observer! The journalist did an excellent job of conveying a message of awareness, empowerment and hope. The photographer at the interview realized she was hypermobile during the shoot, so it was a great experience for all involved!
If you are new to the site, welcome! Hypermobility Hope is here to be your one-stop-shop for information on hypermobility - scroll through the articles, videos, and links to get a better sense of weather or not you are hypermobile or how to deal with the disorder if you have already been diagnosed.
Love and Hope,

Chelsea

http://www.fayobserver.com/Articles/2009/08/31/926002

Monday, August 17, 2009

Twitter

Hypermobility Hope is now on Twitter! Follow my tweets as I write about what it is really like to be living with HMS - the daily obstacles faced, the stress of not knowing what to expect from your body, and the hope of knowing that Hypermobility is what makes us strong enough to tackle any of the hurtles thrown our way.
While there is much academic research about Hypermobility out there, there is a shocking lack of studies on how HMS affects patients' quality of life and interefers with thier daily lives. In the hopes of helping to somewhat fill this whole, I will be reporting as much as I can as honestly as I can about the physical and emotional burdens imposed by HMS.
Please encourage others with HMS or who think they might have the disorder to join the discussion! Together we can bring eachother hope and solutions!
Love and Hope,

Chelsea

www.twitter.com/HMShopenow

Monday, August 10, 2009

Hypermobility in the Lower Body - Pictures

Below you will find pictures that demonstrate Hypermobility in the lower body, mainly the legs, and in posture. The red lines represent the proper/correct/natural alignment the body should have - in other words, the red line should intersect three joints, for example, the ankle, knee, and hip. On the left hand side you will see an example of correct alignment, as would be found with a non-Hypermobile person. On the right you will see an example of improper alignment, as would be found in a Hypermobile person. You can see that on the right hand side, the red line only intersects two joints, namely the ankle and hip. This occurs because the third joint, mainly the knee, is being extended past its intended range of motion (past 180 degrees).

There are two main explanations for this phenomenon. First, the body of a Hypermobile person is different from that of non-Hypermobile people because their connective tissues have a different genetic makeup, which allows joints to have a greater range of motion, extending further than they are intended to do. In other words, the first explanation is a genetic one. The second reason is a bit more subtle, and it has to do with the way in which the brain perceives the physical body. Humans have a sense called proprioception, which is the perception of one's physical body in space. This sense allows us to navigate through 3D space accurately, knowing instinctively where each point of our body is at any given moment. For example, if you were to ask your friend to close their eyes, and then moved their hand to the left 4 inches, your friend would know exactly where their arm was without opening their eyes (even if they can't tell you 4 inches, that is irrelevant - the brain knows where the arm is). If you were to do this to a Hypermobile person, you would have less accurate results; this is because, for whatever reason, people with Hypermobility have an impaired or diminished sense of proprioception. This causes them to be more clumsy, accident prone, and/or uncoordinated. For example, it is common for a Hypermobile person to run into the corner of a coffee table with their knee, despite the fact that they walk past that exact same coffee table in the exact same position every day. For a non-Hypermobile person with perfect proprioception, the brain has a correct vision of space and location, allowing them to navigate around the coffee table without having to think about it. That is another important point about proprioception, it is not an active sense like vision or taste, but an inactive or instinctual sense - you don't have to think about proprioception, or 'turn it on,' your body just does it. Therefore, the hypermobile person is not aware of thier incorrect posture or the overextension of thier joints - that is just how thier body naturally functions. In other words, the brains of both the Hypermobile and non-Hypermobile person, think they are standing in the same position and in the same alignment; it is the Hypermobile person's impaired sense of proprioception coupled with thier innate flexibility that leads to the marked difference between the two.

Saturday, July 25, 2009

Hypermobility in the Upper Body - Photographs

Below you will find photographs illustrating the most common hypermobile joints in the upper body - the fingers, wrist, elbow, and shoulders. The positions/movements shown are commonly referred to as "double-jointedness." The ability to perform these movements is a sign of joint hypermobility and connective tissue laxity.