Link: Too Tired: EDS and Fatigue

Chronic pain and fatigue are two most severe problems present in EDS-HT patients that affect daily life considerably. Many relevant studies related to fatigue in EDS-HT and management strategies are enumerated and referenced in the presentation, “Too Tired: EDS and Fatigue” by Dr. Brad T. Tinkle, a renowned expert on EDS-HT. Click on the image to see the presentation. 



Continuing Medical Education (CME) in Humility and Healing

“Science may have found a cure for most evils; but it has found no remedy for the worst of them all - the apathy of human beings.” ― Helen Keller
My thoughts related to my invisible illness often revolve around whether invisibility borders on inconsequentiality. While I feel sad that I did not receive help for my illness for decades, I also realize there is not much else the doctors could have done. Some diseases among the thousands of diseases are simply not prevalent enough, not known well enough, not covered enough in medical textbooks, or not easily diagnosed. My illness is actually not rare and it is reasonably prevalent, but it is not covered in textbooks and it hides in plain sight leading to missed diagnoses.

Marfanoid Habitus: My long arms of law

You won't see it unless you look for it.
True for most of the subtle signs of hypermobility syndrome (EDS-HT).

An important sign is a mild expression of marfanoid body type, one of the features that EDS-HT shares with other hereditary diseases of connective tissue.


Read about the Marfanoid habitus in the context of EDS-HT here and here.

The term ‘marfanoid habitus’ is used to describe people with a very particular body shape – tall slender physique with long arms, hands, fingers, legs, feet and toes. It is made up of certain carefully assessed anthropometric measures and medical observations. Not all the findings need to be present to use the term. This body shape is commonly found in Marfan Syndrome and Joint Hypermobility Syndrome.
Measurements:
An Arm Span to Height ratio > 1.03
A Hand length to Height ratio > 11%
A Foot length to Height ratio > 15%
An Upper Body Segment to Lower Body Segment ratio < 0.89
(Lower body segment is the distance from the pubic symphysis to the floor. Upper body segment = Total height – lower body segment)



My long arms have actually been very useful to me all my life and I used to be rather proud of them. They have also been teased fondly as "the long arms of law" because I sometimes tend to use hair-splitting arguments like lawyers. But they are only a part of my disease.