Ehlers-Danlos Syndrome Awareness Month

Have you ever heard of the Ehlers-Danlos Syndromes or Hypermobility Spectrum Disorder? I once had someone say, oh yes I know someone with that bendy condition, called…what is it something like ‘earloss candyfloss syndrome’ – I kid you not!

 

May is EDS & HSD Awareness month. By writing this blog I hope to raise awareness and provide insight into these syndromes and the support available here at Spriggs Nutrition and Spriggs Chiropractic. For more information on EDS & HSD Awareness Month, check out this short video.

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome involves issues with connective tissues (specifically the collagen in them). Connective tissues are, in short, responsible for holding you together. In EDS a broad explanation is the recipe your body has for making collagen is wrong, it still makes it but a sub-optimal version.

For some this means joints being less stable or hypermobile, which could be mild or very severe and should be carefully assessed, more information on this here via The Ehlers-Danlos Society. However, for some EDS & HSD involves skin fragility, gastrointestinal dysfunction, chronic pain or fatigue, cardiovascular involvement, the list goes on. There are 13 formally classified subtypes of EDS as well as Hypermobility Spectrum Disorder all with their own diagnostic criteria. Some are potentially life threatening, others less so, BUT  what may be considered less serious types can still have a huge impact on quality of life. As there is no cure, support for patients is about managing their situation and the associated symptoms or conditions (referred to as comorbidities).

Click here to download this EDS-UK-Poster

Why am I interested in Ehlers-Danlos Syndrome?

This is me, Helen, Owner & Registered Nutritional Therapist at Spriggs Nutrition in Newbury, West Berkshire

I was first introduced to EDS in my clinical nutrition training. A colleague saw a patient with EDS seeking nutrition support, not for the EDS directly but for associated symptoms. At that point, I’d not heard of EDS but knew of connective tissue conditions and generalised hypermobility. During a break in clinic, I started researching (once I’d figured out how to spell the syndrome correctly), and immediately I wanted to know more. That was almost 5 years ago.

Since, Spriggs Nutrition was born, sitting alongside the already existing Spriggs Chiropractic, that I run with my husband Mark. Our rehab based clinic allows us the opportunity to provide collaborative care between us where required and that includes those with EDS and hypermobile conditions. First and foremost we like to get people answers to their unresolving health issues (including with tissues!), then do what we specialise in, providing care as individual as you are. If we can’t help, then we work hard to refer to those who can through our extensive network.

My interest in EDS also impacts my professional and academic development, having started a MSc in Advanced Nutrition (Research & Practice) validated by Middlesex University. The focus of my studies has been EDS through complex case management and developing a primary research project – there will be a LOT MORE on that to follow later this month, so keep your eyes on our Facebook and Instagram pages.

The functional medecine tree

The Functional Medicine Tree represents the core aspects of the functional medicine approach we use at Spriggs Nutrition

 

How do we help EDS & HSD patients?

Mark and I are passionate about what we do, our Newbury clinic took years to plan but we had a very specific vision around the type of facility we wanted to build. Ultimately somewhere we could provide our patients with everything they would need to go through care with us and that we love working in.

Whether you are seeking nutritional or physical therapy support the first port of call is a thorough assessment, we don’t assume anything we want to make sure we have all the information we can before making suggestions. This includes your medical history, any test or diagnostic imaging results, support or treatments you’ve tried previously (what worked, what didn’t), but most importantly what you want to achieve, what your goals are. This might be being able to enjoy a meal without the worry of it causing digestive symptoms, or playing with your child/grandchild/sibling/cousin in the garden with less pain. These goals are crucial to understanding how best we can help you.

Tailored Nutritional Interventions

Tailored Nutrition Interventions

We always look to colour & diversity in nutritional interventions

Once we have a clear picture of your medical history, any and all diagnoses, symptoms or concerns we move onto your current nutrition intake,  sleep, stress, movement levels and also support you have available. We gather this information in lots of different ways. We appreciate those with complex situations may have recounted this information before, but as mentioned, we never assume anything. Tailoring interventions to your requirements ensures we optimise your nutrition rather than it being a highly restrictive set meal plan or ‘banning’ foods. Balancing your health status, how well you can absorb nutrients, is there increased demand for certain nutrients whilst identifying certain foods that may be exacerbating symptoms is key. We also provide access to functional testing to allow us to tailor interventions even further. Plus stayed tuned, as we are working on new services dedicated to the Zebra community. For those of you wondering what I’m talking about EDS patients often use the terms Zebras – here’s why.

Tailored Exercise & Rehabilitation

Spriggs Chiropractic clinic

Just one area at Spriggs Chiropractic rehabilitation facility

Everyone is different, just because two people have the same condition, syndrome or symptom doesn’t mean treatment, care or support should be the same, you are an individual. By carrying out physical and neurological assessment allows us to understand your needs. We have x-ray facilities in clinic if required, but providing previous MRI, X-ray, ultrasound or CT is helpful. Many patients think our clinic looks more like a gym, than a chiropractic clinic, and we’re OK with that. The main reason it looks different to most chiropractic clinics, is because we aren’t most chiropractic clinics. We don’t simply ‘click and crack’, in fact for certain hypermobile joints and conditions this is absolutely not appropriate, and having practitioners that understand that is really important for our patients. How do we decide what is appropriate for you? Back to that case history, any diagnostic imaging and physical examination to help us decide what is right for you.

Custom Foot Orthotics

One example of our custom foot orthotics – always with a choice of colour!

Foot health is an important part of overall health and can significantly impact on how our body functions. For some using orthotics for one or both feet can be helpful, either as a shorter term intervention or as part of a longer term strategy. There are both ‘off the shelf’ and custom options available but how do you know what is best or if you need them at all? Getting a thorough assessment is crucial to understand your situation. Some examples we experience with EDS includes fallen arches and plantar fasciitis. In order to prescribe foot orthotics we use up to date 3D scanning technology to help assess your feet and subject to your requirements can have custom orthotics made in a number of materials including 3D printed, making them incredibly lightweight. For more information, click here.

A DMO® single shoulder orthosis

Body Orthoses via DM Orthotics®

Wearing a soft body orthosis can help manage abnormal muscle tone and neurological dysfunction, i.e. holding a part of your body in improved postural alignment to help improve function. The orthosis offers both sensory feedback due to the compression, which also aids in joint stability and strategically placed panels which aid mechanical realignment. Orthoses are available for a hand/wrist, arm, shoulder, pelvis, leg, knee, ankle or a whole suit for example in scoliosis management. Standard options exist but most options are customised, via a thorough assessment including obtaining measurements. X-rays can be obtained at the clinic if required. Here you can read stories from Alex, Hannah & Gill, all EDS patients helped by DM Orthotics® products. We are proud to be working with DMO®, soon there will be a whole section on our Spriggs Chiropractic website dedicated to more information on these services, so stay tuned!

 

What other help is available for those with EDS & HSD?

Whilst we offer a number of avenues of support for EDS & HSD patients but we also recognise our own scope of practice and regularly work with a number of other practitioners. For some, this includes referrals back to GP for further investigation and potential diagnosis via Rheumatology, or to other specialities. We also connect patients to psychological support, or additional approaches. One great example of this is Jeannie Di Bon a Movement Specialist who runs The Zebra Club.

In 2019 I participated in the Ehlers-Danlos Society inaugural Project ECHO® and both Mark and I have joined this years Allied Health Professional’s Project ECHO®. The driver behind Project ECHO® is to bring together health care professionals, across disciplines to educate, share knowledge, research and learn from those already working in EDS & HSD care. This network helps us continue to learn more to help you.

If you, or someone you know has EDS or HSD or would simply like to know more, visit:

The Ehlers Danlos Society – you’ll also find a helpful Medical Professionals Directory there, find the UK list here (and yes I’m on it!)

Ehlers Danlos Support UK – part of the support available includes local support groups (currently being run online)

Hypermobility Syndromes Association

How to contact us

If you’d like to talk to us about your situation, please contact the clinic on 01635 432383 or email hello@spriggsnutrition.co.uk one of the team will help you arrange a free introductory call with myself or Mark (or both!) depending on your needs.

We also support those who are not geographically local to us by several means. If you are interested in us providing you care as individual as you are, then please still reach out to discuss your needs. We’re looking forward to hearing your story very soon.

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