This is why I was delighted to receive an email this week from author Claire Smith about her new book, ‘Understanding Hypermobile Ehlers-Danos Syndrome and Hypermobility Spectrum Disorder’.

The book is fully referenced, reflects the latest information (following the latest criteria from the EDS International Consortium) and can be shipped worldwide. Its ‘soft launch’ last month resulted in excellent feedback.

Here is the description of what is in the book.

Whether you are newly diagnosed, or a patient or healthcare professional this ground breaking book, reviewed by leading experts and reflecting the most up to date knowledge from the EDS International Classification 2017, brings together all the information you most want to know about the newly classified ‘hypermobile Ehlers-Danlos syndrome’ and ‘hypermobility spectrum disorder’ (previously known as ‘Ehlers-Danlos hypermobility type’ and ‘joint hypermobility syndrome’, respectively).

The author has not only managed to compile clear and concise answers to frequently asked questions, such as ‘How do these conditions overlap?’ and ‘Why are people affected so differently?’, she has provided detailed descriptions of symptoms and associated co-morbidities, and has provided comprehensive, accessible, evidence-based information relating to diagnosis and management. Exercise, physiotherapy, surgery and the psychological effects of the disorder are discussed, as well as what to expect during clinical assessment, and much, much more.

From postural orthostatic tachycardia syndrome to mast cell activation syndrome, and from clinical assessment to self-management – if you ever wished that you could find all of the information you need, together, in one place.  

The author is also Editor and Partnership Director for the Hypermobility Syndromes Association (a charity supporting those with hypermobility spectrum disorders, Ehlers-Danlos syndrome, Osteogenesis imperfecta, Marfan syndrome and Stickler syndrome). I wish her all the best with her new book and we’ll certainly add it to our resource list.

You can find out more about this new publication visit the publisher : Understanding Hypermobile Ehlers-Danos Syndrome and Hypermobility Spectrum Disorder’.

The post New Book on Hypermobile Ehlers-Danos Syndrome appeared first on Joint Pain Relief.

The food we eat can play a big role in how healthy we are. You can easily see what happens to a car when it is given the wrong fuel. The human body is so adaptable it can manage lots of different food sources, but it works best on good fuel, and the wrong fuel can lead to big problems.

Why is this important? At a very basic level, if your child is dealing with an illness of some kind, they already have challenges. The last thing a parent would want is to give them additional challenges to deal with. Good nutrition – good fuel – gives your child a chance to face their challenges from a solid footing, and doesn’t have them fighting on additional fronts.

If you or your child is on a low-fat diet, I’d like to suggest you look into the question of what constitutes good nutrition more deeply.

This is a difficult topic. There are so many messages pushing us towards low-fat thinking. There are industries worth billions of dollars that depend on the low-fat message. It would be easiest to take the mainstream view for granted, and assume the advice our public agencies give us about good nutrition is good advice. But there is scientific evidence that suggests we owe it to our children to look very carefully at this matter indeed. Perhaps you will stay with the low-fat story after you have reviewed the evidence.

Good nutrition is of course a far broader topic than the question of the role of fat in someone’s diet. And nutrition only one factor in the overall puzzle of good health. To complicate things further, when it comes to nutrition some factors apply to everyone while other factors relate solely to the individual.

There are vital matters of importance for your child’s health at stake and this is not a quick and trivial topic. But if you delve into this one and follow the evidence, you can at least make decisions about nutrition based on more evidence.

I certainly don’t suggest you take my word for it. But I do suggest you do your own research and form your own opinion as to whether messages we get that suggest low-fat is good are helpful when it comes to ensuring your child gets the nutrition they need.

Articles

British Journal of Sports Medicine:

Saturated fat does not clog the arteries: coronary heart disease is a chronic inflammatory condition, the risk of which can be effectively reduced from healthy lifestyle interventions

Presentations

This presentation from David Diamond, Ph.D, provides background information on cholesterol research and saturated fats

Demonization and Deception in Cholesterol Research

This is the peer-reviewed article referred to in the presentation: How statistical deception created the appearance that statins are safe and effective in primary and secondary prevention of cardiovascular disease

More detailed is this presentation from Dr Peter Attia. Read Peter’s introductory article, or jump right in and view the video below.

https://vimeo.com/45485034

Here are some further articles on this matter.

Short articles about the evidence behind fat in our diet:

• The fats and the furious: how the row over diet heated up
• Michael Mosley: I’m Proof That Eating Fat Can Be Good For You
• Gary Taubes: What If It’s All Been A Big Fat Lie
  
• Peter Attia: The Great Medical Disconnect
• Chris Kresser: The Diet-Heart Myth: Cholesterol and Saturated Fat Are Not the Enemy

And a bit of a longer one:

• UK National Obesity Forum: Eat Fat, Cut The Carbs and Avoid Snacking to Reverse Obesity and Type 2 Diabetes

Finally, if you would like to see the research behind LCHF (Low Carb High Fat), Dr Tim Noakes does an excellent job laying it out in his research paper Evidence That Supports The Prescription of Low-Carbohydrate High-Fat Diets: A Narrative Review.

The post The Evidence for Fat appeared first on Joint Pain Relief.

In this book you’ll find important strategies for not just managing pain, but rewiring it.

Written with evidence and empathy.

You can order the book and have it delivered, or purchase and download it as an e-book.

Visit: Rewire Your Pain

The post Rewire Your Pain appeared first on Joint Pain Relief.

You’ll be busy with medications, appointments, therapies and helping your child cope with the everyday challenges that are coming at them.

Under this sort of pressure it is easy to forget about looking after yourself. It can just feel a bit too hard.

I have found an option that works really well for me. I go to Dawn Meader’s art classes. These transport me into a nurturing place, full of colour and friends.

The classes are suitable for beginners as well as more experienced artists. You don’t have to worry about what you’ll paint. Dawn has developed a delightful way of working that tends to sweep you along and get your creative juices flowing.

You will find the stress and the worry gets lost in the music and the visualisations and the cups of tea.

I’ve made some lovely friends at the classes and found myself laughing even when things at home have been pretty stressful.

I’ve done several of Dawn’s classes over the years and I feel grateful for all the positive energy those experiences have given me.

So if you are in Perth and looking for some fun self care why not check out what’s on offer from Dawn.

You can visit her site here: Dawn Meader

The post Caring For The Mother Ship appeared first on Joint Pain Relief.

It is a fantastic website and has information about joint hypermobility, Ehlers-Danlos Syndrome (all types), Marfan Syndrome, Sticklers and Osteogenesis Imperfecta.

I was particularly thrilled to see that the publications on sale include a Schools Guide.  Robyn Hickmott from Risley Physiotherapy in Applecross, Perth has bulk purchased some and is selling them for $20 a copy. You can contact Robyn at Robyn@riseleyphysio.com.

The post Hypermobility Syndrome Website appeared first on Joint Pain Relief.

It is fantastic to see this sort of material being developed by the Pain Management Network.  PainBytes is the specific project addressing pain in young people and it is much needed.

There’s been a lot of research over the last decade that has shed light on new ways to work with pain and this has been packaged in accessible episodes that families can dip into over time.

Congratulations to the PainBytes team for a great piece of work.  I recommend you and your child check out what’s there.  I’d love to hear what you think.

The post Kids Pain Resource – PainBytes appeared first on Joint Pain Relief.

There is so much pressure on people to package their suffering. I feel it myself. If people ask me how my daughter is going I have to make a quick decision. Do I tell them the truth or select a couple of positive phrases and give them the Disney version. I’m sure you know what I mean.

So THANK YOU Nicole for putting your truth out there. For people in a hard place – the truth is very helpful. Somewhere else in the world there is a lonely 17 year old with EDS saying, “Yes, I know what that feels like.” Your words will make that person feel less alone.

In the early days of editing this website I was careful to keep it positive. Over the years I have learnt that difficult and painful stories can be valuable and in their own way they can liberate us.

So Nicole, here are your precious words. Thanks for shining some light on the truth.

Hello, I’m 17 years old and I can tell you that EDS never gives you a day completely pain free. Flare ups are like a chain reaction. Once one joint starts hurting others follow until your whole body hurts and you are hard pressed to get relief. Your friends don’t understand and just think that you are a baby. How can you explain something to someone who you don’t completely understand yourself and cannot see?

Nicole

On the topic of people telling it like it is – I’d also like honour a fabulous writer Stella Young. As well as having a complex medical condition Stella also had major disability. She was an activist and taught us all to think about difference in a new way.  I’d like to include her fine piece of writing –  A letter to my younger self.

The post How EDS Can Feel Like A Chain Reaction appeared first on Joint Pain Relief.

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This list below represents a huge amount of work by a lot of people over several years.  Many of those people are doctors and specialists who are working hard to improve the services offered to people who experience persistent pain.

If someone in your family suffers from an ongoing pain condition I recommend you take a few minutes to read this list of initiatives.  It might help to see that these issues are thought about and services are getting better all the time.

• Western Australia:
  • WA Health funded a $600,000 dedicated pain service for children and adolescents at Perth’s Princess Margaret Hospital
  • PainHEALTH – a valuable website resource for consumers and health professionals on musculoskeletal pain funded by WA Health was launched and has now had more than 1.5 million hits, and almost 70,000 visitors from more than 82 countries
  • WA Health Networks have been expanded to incorporate a pain management group linking with state-wide pain services
  • Fremantle Hospital Pain Medicine Unit has supported the development of primary care pain services in several Medicare Locals
  • WA Health and Arthritis and Osteoporosis WA have funded the provision of interprofessional pain management education in metropolitan and remote areas
  • Curtin University is providing interprofessional pain education and Rural Roadshows taking pain management education into regional areas of the state
  • WA Health funded a project to improve pain management skills among indigenous health workers
  • Notre Dame University, Fremantle announced plans to establish a Chair of Pain Medicine, with a major donation from Perth philanthropists Geoff and Moira Churack.
    Source Painaustralia Annual Report 2013

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 Pearls are layers and layers of soothing “nacre” intended to insulate the delicate mollusk from the irritant that has abraded it.  At root, a pearl is a “disturbance”, a beauty caused by something that isn’t supposed to be there, about which something needs to be done.

The Sound of Paper, Julia Cameron

I wonder why that is so interesting to me?  I think it’s because I have a shell in which I arrange myself, my life.  Things inevitably intrude, they are not in my plan and they irritate and upset me.  It’s interesting that the oyster doesn’t rid itself of the intruder – it overcomes the intrusion by soothing itself.  Layer upon layer of soothing.  The beautiful pearl is formed.

This week-end I am soothing myself.  Six weeks ago one of my daughters went into a health crisis.  It’s been an intense period nursing her back and we aren’t there yet.  But we are enough along the road to recovery for me to take some time out.  Even though I am in my house every day – there is this weird feeling that I have been absent.  I am reopening my life after an unplanned disturbance.

I started this soothing of self by looking in my fridge.  I haven’t cooked an evening meal in my own kitchen for six weeks.  The fridge reminds me of those ghost towns in westerns with the tumbleweed blowing down the streets and the shutters banging.  I cleaned out my fridge until it sparkled, all white and empty. There was even a dead fly in there.  Bloody hell, I thought to myself.  Why would a fly do that?  When did it happen?  How long has it been in there – this cold dead fly?  The finding of the fly is the bottom of my dark well.  The very bottom – and I am climbing out now. Back into the gentle winter sun.

I shopped for the food that I love.  Fabulous salad food. I bought –

• sunflower seeds
• pepitas (pumpkin seed)
• pine nuts
• walnuts
• carrots
• Japanese pumpkin
• sweet potato
• sunflower shoots
• chorizo sausage
• baby spinach
• marinated feta cheese
• peanuts
• almonds

Then I roasted the seeds and tossed them with tamari (a sweet soy sauce).  I roasted up pumpkin which is my most favourite thing to eat.  I made some honey roasted walnuts. I stacked these in glass jars so I can see them every time I open the fridge.  They smile back at me and say you are back!

I experimented with steel cut oats and some hippy stuff I’ve never tried.  They take ages to cook and have a nutty and creamy taste.  I chop up my dried apricots and figs and almonds.  I sprinkle seeds and drizzle honey. I am channelling my lovely mother and her careful breakfast bowls. I am finding my way back into my life – using interesting new things.  I am wondering where I have been.

I would like to pause here to tell you how much I love feta cheese.  I buy a little jar that has cubes marinating in peppercorns and other bits and pieces.  Sometimes when I am feeling flat I go to the fridge and I eat a cube of feta.  Maybe on a cracker or just on its own.  The taste of marinated feta seems to fire neural pathways that say – your life has meaning, everything is ok, you are a happy person with feta in your fridge.  I must never to be without a jar of marinated feta ever again.  Why would you when it clearly has such life-saving properties?

Last week my youngest daughter called me.  She was sad and she wanted me to come over.  Boy troubles.  I drove there imagining how terrible things were.  What I found at her house was a miracle.  I sat at the kitchen table fascinated by my own daughter.  I watched as she chopped up vegetables and cooked us a tasty stew. She stood there, a glass of wine in hand, telling me the sorry tale.  She had lovely music playing and a scented candle burning.  Her hair was swept up and she looked so effortlessly gorgeous. Don’t get me wrong, it was really a sad time.  Maybe this boyfriend was not for her she wondered aloud.

What shocked me was how she was handling this.  Not in a pub, not with greasy takeaway food, not in any of the one hundred dubious choices I made over the years.  Here was my own child cooking a meal and chatting to her Mother.  I felt some shift in myself.  This grown-up child that I worry about so much may just know how to soothe herself better than I ever did.  Maybe it skips a generation.  My Mum knew how to comfort herself.  My daughter knows.  How is it that I, a middle-aged woman, feel I am just learning?

I plan to roast sweet potato this afternoon.  I will continue to find threads of myself and follow them.  I will be led by my mother and my daughter and I will soothe myself.  I will think of you soothing yourself from the things that intrude and irritate.

So in summary, the soothing of ourselves can be a beautiful thing and the meaning of life can be found in a jar of feta.  Happy pearl making.

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