Patricia Weltin of Beyond the Diagnosis talks about Elhers-Danlos syndrome, a rare disease that afflicts two of her daughters.

Ehlers-Danlos syndrome is a group of connective tissue disorders. There are various forms of Ehlers-Danlos. According to the NIH, there are numerous types of Ehlers-Danlos syndrome had been described and to date, over 19 genes have been associated with this disease. Most of those genes (COL1A1, COL1A2, COL3A1, COL5A1, COL5A2, ADAMTS2, FKBP14, PLOD1, and TNXB) are linked directly or indirectly to collagen production.

A common symptom in most people with Ehlers-Danlos syndrome is an unusually large range of joint movement (hypermobility). While often viewed as an interesting school yard trick, the loose joints are unstable and prone to dislocation and chronic pain.

Many people with the Ehlers-Danlos syndrome also have soft, velvety skin that is elastic and fragile. Organ damage and bone abnormalities can also be observed in these patients.

As Weltin explains in this video, her daughters grew up relatively normal but as soon as puberty began, aches, pains, and joint dislocations became more commonplace.

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Dr. Anand Saggar describes the complexity of Ehlers-Danlos syndrome. Likening it to the mythological creature of the hydra, Dr. Saggar cautions that EDS has “many heads”, and it can affect individuals in vastly different ways.

Dr. Saggar goes on to explain just how common connective tissue disorders can be in patients with other disorders and even in the general population. He emphasizes the importance of genetic testing to confirm diagnoses of connective tissue disorders.

This lecture was presented at the 2019 London Roundtable provided in partnership with the Ehlers-Danlos Society, focusing on issues surrounding dysautonomia, connective tissue disorders, Chiari malformation and related syndromes. (2019)

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Welcome to J House – an imperfect family working together towards a happy home filled with love and meaningful connections. We focus on learning, serving, and playing together as a family. We (Jeremy and Kendra) have 5 little kids: Isaac, Elise, Caleb, Laura, and Janae.

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Kelly Bowman has natural solutions that may help your acid reflux.
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What is Ehlers-Danlos syndrome? Ehlers-Danlos syndrome is a group of related genetic conditions which are all caused by defective collagen synthesis. Normally, collagen provides strength and elasticity to our bodies, and it’s found in the skin, ligaments, tendons, and bones. In Ehlers-Danlos syndrome, defective collagen leads to stretchy skin, easy bruising, and joints that are super flexible.

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Ehlers-Danlos syndrome or EDS is a group of diseases with rare types I treat using a holistic approach. There is a more common type called hEDS, or hypermobility type that often goes undiagnosed for years but can explain lots of ‘weird’ symptoms from fatigue and brain fog to pain, in addition to being more flexible in some joints. But importantly, as we get older, even people with hEDS can get stiff, and this means they sometimes get missed and diagnosed instead with other things like chronic fatigue, fibro, or depression without a known cause. Often when I tell someone they have EDS and that it can explain a lot of their health issues, it’s a huge relief and can also help target treatments better, from cannabinoids to functional restoration programs and mitochondrial energy support.

#rarediseaseday #ehlersdanlossyndromes #EDS #ukmedicine #burnoutrecovery #cannabinoids #fibromyalgia #chronicfatigue #mentalhealth #mentalwellbeing #qualityoflifematters #naturalmedicine #botanicalmedicine #londonwellness #wellnesslondon #integrativemedicine #holisticdoctor #holisticmedicine #functionaldoctor #chronicpainawareness #womenshealth #mentalwellbeing #cannabinoidmedicine #resiliencemedicine
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By bringing together top doctors, scientists and engineers, Terry Ragon believes he can succeed where major governments have failed and cure one of the world’s wiliest viruses.

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Injuries in the martial arts or sports can be depressing. Here are three tips that will help you stay on track during recovery.

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TIP #1: There is always something you can train.

No matter how you’re injured, you can always go to class, observe, make notes, meditate, or visualize. But I’ll bet you can do a lot more than that.

If you don’t have arms, train your legs. If you don’t have legs, train your arms. Remember— just because you can’t train everything, doesn’t mean you can’t train something.

This is a crucial mindset for martial artists. Why? Well, if someone chokes you and you keep thinking, “I can’t breathe! I can’t breathe!” then you’re going to die. But if you focus on what you CAN move and what you CAN do, then you have a chance to escaping. If you focus on what you can’t do, you won’t do anything.

TIP #2: Any training is better than no training.

If you can’t make it through a whole class, do half a class. Do a half-hour. Do five minutes. Do five seconds. Do something!

Some people see injuries as “down time”, but that’s a huge mistake! There is no such thing as down time or up time… there is only time. Time is going to pass whether you use it or not. I recommend you use it.

TIP #3: Don’t think of your pain as an injury, think of it as an opportunity.

It may sound crazy, but I believe that injuries are actually good for you. I’m not saying I want you get injured, but recovery periods can actually be very positive.

Imagine a world-class coach says to you, “Hey—I have a plan to improve your footwork. For the next six weeks, no punching, kicking, forms, or bags… just footwork!” Exciting, right? You have a plan. You have a purpose. You know you will be building new skills.

So, what’s the difference between the coach and a doctor who says your injury is going to take 6 weeks to heal? NOTHING! The only difference is mindset. In one case, you are making a deliberate choice and in the other, you feel like a victim.

It may sound harsh, but injuries don’t make you special. They happen to everybody! The only difference is how people react to them. So, get back to work and be a champ, not a chump!

I hope these tips help! Don’t let the darkness defeat you. If you let an injury beat you up, then you just make it that much easier for a bad guy to beat you up!

Keep fighting! 🙂

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This video is part of a series about a rare condition called Ehlers-Danlos syndrome, and how working as a multidisciplinary team can improve patient outcomes. The videos include interviews with a consumer, Tracey, and members of the multidisciplinary team that help to manage her condition. In this video, Dr Fraser Burling speaks about his experience working as a dual physician and rheumatologist in a multidisciplinary team to improve health outcomes for patients, including Tracey.

An international expert opinion was received on the treatment described in these videos. Download a copy of the opinion, written by Dr David Rabago from Penn State College of Medicine: https://www.hqsc.govt.nz/assets/Consumer-hub/Partners-in-Care/Publications-resources/Prolotherapy-review-letter-Dr-Rabago.pdf
—

This series of videos describe the experience and treatment of one consumer with Ehlers-Danlos Syndrome (EDS). Three members of the multidisciplinary team (MDT) involved in the care and treatment of this person are interviewed.

We acknowledge that a MDT can be much larger than this and the video does refer to the wider MDT as an important aspect of diagnosis, treatment and care of people with EDS.

Owing to the diverse and complex presentation of EDS, Rare Disorders NZ (formerly NZORD) has produced guidance (funded by the Ministry of Health) that will help health care professionals and providers to assess, diagnose and plan care for people with EDS.

Such guidance will hopefully promote discussion amongst health providers treating EDS, resulting in improved care and outcomes for consumers.

ACC sourced expert opinion about the evidence-base of prolotherapy being provided by Dr Burling. This expert opinion stated, “Clearly there is support for this in the literature.”

https://www.hqsc.govt.nz/assets/Consumer-Engagement/Resources/Prolotherapy-review-letter-Dr-Rabago.pdf

At an ACC review hearing, the reviewer considered this treatment had been excluded from the ACC prolotherapy assessment and that it was “a generally accepted means of treatment within New Zealand.” As such, ACC paid the cost of prolotherapy for the consumer during the entire rehabilitation programme. The prolotherapy treatment described by Tracey has had positive results for her.

There is mention throughout the videos of the prevalence of EDS and indication that this is varied; prevalence will depend upon the definition being used and this will determine the inclusion criteria.
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The U.S. Food and Drug Administration has issued a troubling new warning about popular nerve pain medications – saying the drugs could cause severe breathing problems and even death. Katie Johnston reports.
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