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#ehlersdanlossyndrome

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Ruth Cheesley (she/her)
Really fun swim training session with #IpswichTriathlonClub this morning, focusing on streamlining breathing and really getting used to minimal extra head rotation to improve efficiency.

Lots of water up my nose and in my mouth but I'm getting the hang of it finally!

Did a timed 300m warm up swim which came out at just over 7 minutes, so might have to revise my expected swim time for the sprint triathlon in the summer!

#TriathlonTraining #Triathlon #Swimming #SwimTraining #EhlersDanlosSyndrome #EDSAthlete #ThisGirlCan
#thisgirlcan
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Ruth Cheesley (she/her)
Testing out the new trisuit, new helmet and my cycling glasses before using them in anger!

Suit will take a bit of getting used to as it's got a lot less padding than my bib shorts, and the helmet is great but haven't quite got it dialed in for comfort quite yet, needs a bit more tweaking!

Loving the TrainingPeaks Virtual visuals and especially the super handy little tick that tells you how many of each interval you've completed, so simple but so helpful!

#TriathlonTraining #TrainingPeaksVirtual #TPVirtual #TrainingPeaks #Triathlon #NewHelmetRide #NewHelmetDay #EhlersDanlosAthlete #EDSAthlete #EhlersDanlosSyndrome #ThisGirlCan #MyFirstTriathlon
#myfirsttriathlon
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Mark Martino

From The Ehlers-Danlos Society: ✨We’re thrilled to announce the release of a dedicated volume in Frontiers in Neurology titled “Neurology and Connective Tissue”, featuring the outstanding contributions of members from The International Consortium on the Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) and the @ehlers.danlos CORE Network of Excellence.

Read: frontiersin.org/research-topic #EhlersDanlosSyndrome

FrontiersFrontiers | Neurology and Connective TissueConnective tissue compromise, as is seen in the heritable connective tissue disorders collectively called Ehlers-Danlos Syndrome, but also acquired connectiv...
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Training with EDS

If you're keen to progress in sport and you're working with #EhlersDanlosSyndrome, biomechanical analysis can be incredibly helpful to pick up problems with form, weak muscle activation and compensation, and much more.

Here's my experience of having a gait analysis done to help with my running form: trainingwitheds.com/blog/artic - I learned so much and it's really improved the focus in my strength training and as a result, my running form has also improved.

trainingwitheds.comWhen did you learn how to run properly?A community for people with EDS who are interested in physical activity and training with EDS.
#EDS#GaitAnalysis#EDSAthletes
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Training with EDS

One of the most important things I've learned as an athlete with #EhlersDanlosSyndrome is the importance of taking care of your feet.

No matter what sport you do, caring for your feet should be one of the high priority things on your radar to prevent injury and support your performance.

Here's a few notes from my experiences as a runner, cyclist and weightlifter: trainingwitheds.com/blog/artic

An image of a weight distribution scan of someone standing in bare feet. There's red blips on both the heels, and a little bit of orange in the midfoot.
A photo of a pair of trainers looking from above, worn by someone who is covered in dark coloured dust and is wearing Aircast A60 braces on both feet.
A photo of someone wearing a pair of five-finger Vibram shoes.
#EDS#EDSAthlete#TrainingWithEDS
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Broadwaybabyto

What’s happened to curiosity in medicine? A story of two appointments.

If you’re a healthcare worker and your patient says they’re in pain, a medication isn’t working or something doesn’t seem right … listen to them. If what they’re saying seems “odd”… don’t dismiss them out of hand. Get curious. Ask questions. Listen to the patient.

The human body is incredible and unique. We all respond in different ways - and we learn more about the human condition every day. If something isn’t “adding up”… it could be a missed diagnosis.

Here’s one of my most frustrating examples:

I go to the doctor with a strange type of infection that is usually only seen in end stage AIDS patients.

Doctor: “Have you been tested for HIV?”

Me: “Yes - it was negative.”

Doctor: “huh. You sure? Let’s test you again.”

It comes back negative AGAIN

Me: “so what now?”

Doctor: “I don’t know. That’s really weird. Here’s the medication we would give you IF you had AIDS.”

That was IT. No follow up. Zero curiosity. No testing to determine WHY I had an infection only seen in AIDS patients when I did not have AIDS. Heck they wouldn’t even run an immune panel to take a closer look at my CD4 and CD8 count. It was just “sorry about your luck but this is not my problem.”

Contrast that with one of my BEST experiences with a VERY curious doctor:

I was there for suspected POTS which I was diagnosed with. In the process the cardiologist found an aneurysm and felt that given my age, lifestyle and persistently LOW blood pressure it was “odd” for me to have one.

She gave me a huge questionnaire of seemingly unrelated questions to fill out - about everything from dental issues to gynaecology and what I was like as a young child.

She reviewed the questionnaire with me and really took the time to LISTEN. We talked about previous illnesses, injuries, surgeries and how I felt in my body. I was treated like the expert - which had never happened before.

I left that appointment exhausted and stunned as it was the first time a doctor had worked so collaboratively with me. I was referred to genetics where I was finally given the diagnosis that put all the missing pieces together - EDS (Ehlers Danlos Syndrome).

The signs had been there for years - but no one ever slowed down and spoke to me long enough to realize it. No one was curious enough. No one asked me what it was like to be in MY body.

It seems so simple - yet it’s a skill many healthcare workers lack.

My ask of them tonight is to listen to your patient. Let them be partners in their care. Respect that while they may not have a medical degree - they are the experts in their own body and can help you if you let them.

Be curious. Always.

#curiousity#medicine#healthcare
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Ruth Cheesley (she/her)

Just over a year since I was last able to do a pump class with a barbell due to the movement limitations from the fracture and repair .... Absolutely delighted to be back, started with light weight to see what limitations there still are but it seems the only difficulty is weight bearing in full extension, like planks and mountain climbers which I did from the box instead of the floor. Progress! 🎉

Ruth standing at the end of a mat on the gym floor with a Reebok step at the end of the mat and a lightweight barbell with 1.25kg weights on each end. She's wearing vibram 5 fingers shoes.
#BrokenWrist#ORIFRehab#ORIFWrist
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