Tag Archives: EDS

Lab-grown cartilage as strong as natural

Lab-grown cartilage as strong as natural | Science Codex | June 17, 2017

This could finally be a solution to replace defective deteriorating cartilage in joints of patients with connective tissue disorders. Perhaps the same methods could eventually be used to grow sturdy tendons and ligaments for us too.

Lab-grown cartilage grown shows similar mechanical and chemical properties to natural cartilage, which allows our joints to move smoothly, according to a new study.

The biomedical engineers from University of California, Davis, created a lab-grown tissue similar to natural cartilage by giving it a bit of a stretch, they wrote in their Nature Materials study.   Continue reading

Chronic fatigue in EDS Hypermobile type

Chronic fatigue in Ehlers–Danlos syndrome—Hypermobile typeHakim – 2017 – American Journal of Medical Genetics Part C: Seminars in Medical Genetics – Wiley Online Library

CONTROVERSIES

It is the authors’ opinion that the criteria used for diagnosing CFS and hEDS are inadequate and contribute to diagnostic confusion.

To meet a diagnosis of CFS, fatigue must be “unexplained by other conditions.”

Therefore, a diagnosis of hEDS must exclude a diagnosis of CFS.

However, hEDS is likely to be substantially under-diagnosed and it is likely that some patients diagnosed with CFS may meet or would previously have met the criteria for diagnosis of hEDS.   Continue reading

Frequency of CYP2D6 alleles affecting drug metabolism

Prediction of CYP2D6 phenotype from genotype across world populations – Genet Med. 2017 Jan; – free full-text PMC article

Owing to its highly polymorphic nature and major contribution to the metabolism and bioactivation of numerous clinically used drugs, CYP2D6 is one of the most extensively studied drug-metabolizing enzymes and pharmacogenes.

CYP2D6 alleles confer no, decreased, normal, or increased activity and cause a wide range of activity among individuals and between populations.

I’ve added a glossary of genetic terms at the end of this post.  Continue reading

Did Elvis have EDS?

Did Elvis have EDS? –  Practical Pain Management – Forest Tennant, MD, DrPH – April 2017

From Letters to the Editor:

After I finished reading the article about Elvis Presley’s medical history by Forest Tennant, MD, DrPH,1 I wondered if he might have had Ehlers-Danlos syndrome (EDS)?

The facts seem consistent with many of the medical issues common with this connective tissue mutation, including the stretched body parts, an inability to detox chemicals, self-medication, and an apparent need for greater pain relief.   Continue reading

Ehlers-Danlos Syndrome or Disease?

Ehlers-Danlos Syndrome or Disease? – Journal of Syndromes – Published in Avens Publishing Group,  May 2016

Although first described in 1892 by Tschernogobow in Moscow, the medical history of Ehlers-Danlos syndrome (EDS) begins with Edward Ehlers’s description in 1900 in Copenhagen.

Several avatars would come to stymie its identification to this day, despite its frequency, and foster confusion with other pathologies.

The first of these is the description by Alexandre Danlos (1908), who particularly emphasized a sign: excessively stretchable skin which would become solidly anchored in the minds of doctors who, even today, use it to rule out the diagnosis if it is not found.   Continue reading

The Reality of Living With Fluctuating EDS Symptoms

The Reality of Living With Fluctuating Fibromyalgia Symptoms | The Mighty – April 2017 Mattea Sykes

This article was mistitled because it is actually about EDS. 

Many people start each day with a refreshing shower, and then go to work or achieve their tasks for the day, thinking of it as nothing more than a quick way to wake up.

But for some people, like those with Ehlers-Danlos syndrome, fibromyalgia, multiple sclerosis, rheumatoid arthritis or lupus SLE, it is the entire day’s chore, hard work and achievement that involves a great deal of time, pain, effort, endurance and spoons.  

 

Here is a summary of two consecutive days from this week to show the reality of living with a fluctuating condition.

Mattea goes on to deliver a blow-by-blow narrative of a couple of days with EDS: The Reality of Living With Fluctuating Fibromyalgia [EDS] Symptoms

Living with chronic pain – from EDS

Living with chronic pain –  – April 20, 2017

I’m sure many folks with EDS can relate to Sydney’s struggle with her typical pain from EDS.

There are days that Sydney Davis can’t move from her bed, because her entire body hurts. “It’s exhausting to take a shower,” she said.

Davis likes to stay active. She climbs mountains, she plays sports and she wants to be a physical therapist.

Many folks with EDS seem to live with this contradiction: being active and being in pain. Many of us have increasing pain as we age precisely because we were too active for too long while we were still able. Continue reading

Hormones affect connective tissues

Alterations to cell metabolism in connective tissues of the knee after ovariohysterectomy in a rabbit model: are there implications for the postmenopausal athelete? – PubMed – NCBI Br J Sports Med. 2010 Sep;

Participation in regular exercise and athletic activities across the lifespan is encouraged to maintain the cardiovascular and musculoskeletal systems and general wellbeing.

Before the menopause there is an increased risk of anterior cruciate ligament (ACL) injuries in female athletes, whereas there is an increased risk of joint diseases such as knee osteoarthritis after the menopause.

Although there are few data regarding alterations in individual connective tissues of the knee in humans either before, during or after the menopause, it is possible to assess changes in experimental models following surgical menopause.   Continue reading

Choosing Acceptance Over Fighting: Pain Warrior no Longer

Choosing Acceptance Over Fighting Ehlers-Danlos, Mitochondrial Disease | The Mighty | Apr 2017 | By Maria Stebbins

“She’s a real fighter.”

I have such mixed feelings about that phrase. Yes, my body presents plenty of challenges, which I face constantly. However, the language equating this life to a violent war doesn’t quite fit.

You see, genetic conditions can’t be vanquished like nasty infections. For better or worse, they just…exist. I wrestle with treating individual symptoms and eking out a little more energy, but the root of all that won’t retreat under heavy fire.

If I’m fighting a battle, it’s against myself. Maybe it’s just me, but I’d prefer not to spend my days at war with myself, physically or spiritually.  Continue reading