Today I was notified that my story, “When Doctors Say My Pain Is Impossible, It Is, in Fact, Possible“, was featured on The Mighty’s Facebook page: Ehlers-Danlos Syndrome on The Mighty.
The Ehlers-Danlos Society has a series of free EDS educational modules for which doctors can even earn CME credits, so it’s worth their time to take a look. EDS patients, I encourage you to make your doctors aware of this.
This free Ehlers-Danlos Syndrome CME Physician Education Program is the first online EDS course providing CME credits and covering the fundamental principles for the diagnosis, classification, and treatment of Ehlers-Danlos Syndromes and related disorders as well as associated conditions.
Any healthcare providers interested in learning more about EDS diagnosis and treatment are encouraged to view the presentations whether or not they desire the CMEs. Continue reading
Local anesthetics (LA) work by blocking sodium conductance through voltage-gated sodium channels.
Complete local anesthetic resistance is infrequent, and the cause is unknown. Genetic variation in sodium channels is a potential mechanism for local anesthetic resistance.
A patient with a history of inadequate loss of sensation following LA administration underwent an ultrasound-guided brachial plexus nerve block with a complete failure of the block. We hypothesized that LA resistance is due to a variant form of voltage-gated sodium channel. Continue reading
Connective tissue is a fibrous cell-sparse network that helps to connect, support, bind, and separate neighboring tissues from one another.
It exists in and around every organ of the body.
Probably the most recognizable forms of connective tissue are bones (calcified), tendons, ligaments, cartilage, and fats. One major component of connective tissue is the extracellular matrix (ECM), which is composed of various molecules (e.g., proteins) that give structural and communicative support to nearby cells. Continue reading
I recently received an email from a reader describing a strange connection she noticed between a sleep disorder and opioids:
I thought you might find this interesting–I most certainly did.
Morphine reversed narcolepsy in mice, and a brain sample from a deceased woman–previously treated for narcolepsy, but who’d taken morphine for a bad back–showed that the morphine had caused her hypocretin (orexin)-managing brain cells grow back to the point where she had complained of even sleeping too much! Continue reading
Joint hypermobility is a common, primarily benign finding in the general population. However, in a subset of individuals joint hypermobility causes a range of clinical problems mainly affecting the musculoskeletal system and, to a lesser extent, extra-articular disorders.
Joint hypermobility often appears as a familial trait and is shared by several inherited connective tissue disorders, including the hypermobility subtype of Ehlers-Danlos syndrome (hEDS) and benign joint hypermobility syndrome (BJHS/JHS).
Joint hypermobility is not just about painful joints – it’s a full-body syndrome. Continue reading
Whole-exome sequencing of a family with local anesthetic resistance. – PubMed – Minerva Anestesiol. 2016 Oct
Many people with EDS experience eventually discover that local anesthetic doesn’t work on them.
This seems so improbable that doctors simply cannot believe it and cause their patients much suffering when they slice into the skin for some procedure for which it should be numbed.
Local anesthetics (LA) work by blocking sodium conductance through voltage-gated sodium channels. Continue reading
This article describes how physician generalists can make useful working diagnoses of most patients with hypermobility syndromes, and proceed with effective treatment for them.
It is primarily written for physicians. Individuals who suspect they may have a hypermobility condition may wish to read it through, and have their primary care practitioners use it to make a diagnosis. Continue reading
I found this article in a business publication (Future Medical Insights). Though the article is focused on the “market for amino acid metabolism disorders” and details how much that market is expected to grow, it also happens to mention a new EDS clinic – perhaps there is some connection I’m not aware of?
Ontario Witnesses Launch of New EDS Clinic
Key companies and manufacturers can take into account the point that Ontario has been expanding clinics for the people that are suffering from rare diseases.
Ehlers-Danlos syndrome, hypermobility type (EDS-HT) is unexpectedly common and is associated with a high rate of gastrointestinal manifestations.
We herein report the first documented case of mobile cecum associated with EDS-HT. A 21-year-old woman with repeated right lower abdominal pain was initially diagnosed with EDS-HT.
The cecum is an intraperitoneal pouch that is considered to be the beginning of the large intestine. It is typically located on the right side of the body (the same side of the body as the appendix, to which it is joined). Continue reading