Chronic Pain India - A new initiative

There is a new initiative by chronic pain warriors in India which is an ambitious project to build a community of support and a platform for awareness and advocacy for people suffering from chronic pain  and invisible illnesses in India. 

I quote from the about page:

"At Chronic Pain India, We plan to build a strong community for every chronic pain sufferer in India, suffering from any illness. We tend to unite every chronic pain sufferer as one and plan to make their voices be heard through the medium of writing. It will be used as a mean to raise awareness about various chronic pain conditions and chronic illness which are usually invisible through naked eyes. We plan to share the pain experiences of sufferers so that the general population can have an insight to it and they could have a better understanding. This will be like a safe house for every chronic pain sufferer in India to shed down their problems and we will slowly try to work on them & try to bring a change. It can also be used by medical practitioners to understand the perspective of the pain sufferer and they can have a better understanding of the pain patients and can provide them with a holistic approach towards their treatment."

Wishing Chronic Pain India the best! Here is the link to the site: 


Where do missing zebras go?




After I got my diagnosis, I researched online about hypermobility disorders and a good deal of useful information I found was on the blogs of fellow zebras. As you read someone's blog, sometimes from years ago, and follow their story - how they were diagnosed and their journey afterwards, you get entwined with the journey at some level. You hope the best for them, you root for them. You cry for the pain they faced and find support in their trials and tribulations. You understand their views and value their insights. And then the blog ends suddenly. The last post was some years or some months ago. 

New Updates on HSD, JHS, and h-EDS (2017)

The new definitions, terminology and criteria for a better understanding of joint hypermobility disorders are here (2017). All the relevant links to articles in the Ehlers-Danlos Society website can be seen in one place: click here

What is HSD?

The Unending Moment of Torment


Chronic pain at its peak was like an unrelenting hollowness, a continuous  deafening hum, an endless torture session where every moment felt like dying but death never came. Though these lines by Gulzar allude to a different context, I often found them ringing in my head when I was submerged and drowning in pain. 


दिल दर्द का टुकडा है पत्थर की डली सी है
एक अंधा कुंवां है या एक बंद गली सी है
एक छोटा सा लम्हा है जो ख़त्म नहीं होता
मैं लाख जलाता हूं ये भस्म नहीं होता
ये भस्म नहीं होता 

Exercising in hEDS

An excellent talk I highly recommend - I found it very helpful. Watch it full-screen, I am sure if you are new to this new to this condition and are watching it for the first time, you will want to take notes! 

Intelligent Exercise-How You Can Take Control with EDS
Webinar by Kathryn Lister,  October 28, 2015.





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As you live with this disease after getting a diagnosis, you know more and more about it and manage yourself better and better with time. It is different from intuitively figuring out a few things that make you better or worse, without diagnosis. In the latter, you often don't have the necessary evidence or the scientific causality as to the WHY something aggravates your condition. So again, I think a diagnosis, even a partial but correct diagnosis is important. 

I am continuously learning, and as I find some things worth sharing I try to write here or on FB. Some ideas change or get refined too with time as I find more information or understand things better.  

I am writing below some key points I have learned over time about exercising, they are relevant to me and may not be all useful for another person. Every body and each case of hEDS/HSD is different and this is just a list of things that I found useful. These points are not just about exercises, they extend to other topics too, because often everything is interrelated. 


Some old talks on EDS/hEDS

New changes are happening in the diagnostic criteria of EDS, hEDS and hypermobility spectrum disorders. I would like to share some old talks again that are extremely informative and must-watch for anyone wanting to know about these  conditions. 

Important Information

Feb 2017

Many changes are taking place that are going to lead to changes in the terminology associated with hypermobility related diseases. The future posts in this blog will reflect that, and where I can, I will edit/delete past posts to reflect that updates for the reader. However, I am waiting to fully understand these changes, and the updated diagnostic criteria on EDS that will be published in March 2017. I am also inclined to keep those pages (with an update line on top)  as a reminder of how confusing the things were - that is hoping things will be less confusing in the future.


Latest Updates: Feb 2017: A Framework for the Classification of Joint Hypermobility and Related Conditions

A Framework for the Classification of Joint Hypermobility and Related Conditions

Authors: MARCO CASTORI,* BRAD TINKLE, HOWARD LEVY, RODNEY GRAHAME,
FRANSISKA MALFAIT, AND ALAN HAKIM

Am J Med Genet Part C Semin Med Genet 9999C:1–10.

-A new classification system for Ehlers–Danlos syndrome (EDS) identifies more than 20 types of EDS which has led to patients who do not fulfil the criteria of "full-blown" EDS-HT but have many features of hEDS and Joint Hypermobility, to be left without a diagnosis.

- Highlights the need for a single set of criteria that can substitute the previous criteria for the overlapping conditions of JHS and EDS-HT

- Introduces a concept of a spectrum of pathogenetically related manifestations of joint hypermobility intersecting with syndromes that manifest as multiple conditions including joint hypermobility resulting from a single gene (pleiotropic syndromes)  - as distinctly apart from other syndromes with joint hypermobility

Proposed classification:




Latest Updates: Feb 2017: Hypermobile Ehlers–Danlos Syndrome:Clinical Description and Natural History

Top experts on HEDS come together in this review article to describe what is known and understood so far about the cause, presentation and management of HEDS.

Hypermobile Ehlers–Danlos Syndrome (a.k.a. Ehlers–Danlos Syndrome Type III and Ehlers–Danlos Syndrome Hypermobility Type): Clinical Description and Natural History

Authors: BRAD TINKLE, MARCO CASTORI, BRITTA BERGLUND, HELEN COHEN, RODNEY GRAHAME, HANADI KAZKAZ, AND HOWARD LEVY

Am J Med Genet Part C Semin Med Genet 9999C:1–22.


Quick Info (2016)

The content in this post is outdated. There are new updates to the current understanding of joint hypermobility disorders. Please read this post

I am keeping this post and the content as a historic record of our understanding of the disease until 2016. 

Not just the joints: A review article on the comorbidities of JHS/HEDS

Ehlers–Danlos Syndrome - Hypermobility Type: A Much Neglected Multisystemic Disorder

Yael Gazit, Giris Jacob, and Rodney Grahame.

Excerpt from abstract:
Throughout the years, extra-articular manifestations have been described, including cardiovascular, autonomic nervous system, gastrointestinal, hematologic, ocular, gynecologic, neurologic, and psychiatric manifestations, emphasizing the multisystemic nature of EDS-HT. Unfortunately , EDS-HT is underrecognized and inadequately managed, leading to neglect of these patients, which may lead to severe disability that almost certainly could have been avoided. In this review article we will describe the known manifestations of the extra-articular systems. 

Review Article: Hypermobility syndromes and chronic or recurrent MSK pain in children (Oct 2015)

By Marco Cattalini, Raju Khubchandani, and Rolando Cimaz
(Dr. Raju Khubchandani is a Pediatric Rheumatologist at the Department of Paediatrics, Jaslok Hospital and Research Centre, Mumbai, India)

Abstract

Chronic or recurrent musculoskeletal pain is a common complaint in children. Among the most common causes for this problem are different conditions associated with hypermobility. Pediatricians and allied professionals should be well aware of the characteristics of the different syndromes associated with hypermobility and facilitate early recognition and appropriate management. In this review we provide information on Benign Joint Hypermobility Syndrome, Ehlers-Danlos Syndrome, Marfan Syndrome, Loeys-Dietz syndrome and Stickler syndrome, and discuss their characteristics and clinical management.

Pediatr Rheumatol Online J. 2015; 13: 40.
Published online 2015 Oct 6. 
PMCID: PMC4596461
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Excerpts relevant to HEDS:

A Parable for HEDS


#EDS   #Hypermobility Syndrome   #HMS   #JHS   #EDS-HT  

Information booklet for JHS/HEDS in kids, part - 2

Last month, I made a brochure (Part 1) aiming to provide information to school teachers about what is JHS/HEDS and how it affects children.

The brochure in this post is the second in the series, and offers tips to teachers on how they can support a child with EDS.

These are printable on A4 sheets.




The pdf file can be downloaded here.

Link: Hypermobility, Hyperactivity of Autonomic Nervous System and Psychopathology


A recently published doctoral thesis by Jessica Anne ECCLES has studied "the relevance of joint hypermobility and autonomic symptoms, particularly orthostatic intolerance, to clinical psychopathology."

EDS Awareness Month: Information booklet for JHS/HEDS in kids

May is EDS awareness month. 

I have been mulling over what sort of a post would contribute to raising awareness about EDS. I think people who read EDS related blogs are already aware of it because of some sort of personal or professional connection to this disease. 

Finally I decided to make a series of information brochures for JHS/HEDS, that could be easily downloaded and shared by people. And the brochures hopefully, would eventually reach some people who are not already deeply familiar with this disease.

This is the first one of the series. This brochure aims to provide information on how JHS/HEDS affects children, which should be of interest to parents and teachers. 

Click to view and download full-size image

The pdf file can be downloaded here.

Please see the A4 printable part-2 of the booklet, with the tips for teachers of JHS children here.

Link: EDS, Hypermobility Type: Evolving Perspectives on a Poorly Understood Problem - Dr. Derek Neilson

"EDS, Hypermobility Type: Evolving Perspectives on a Poorly Understood Problem" is an informative talk by Dr. Neilson that touches on many important issues related to EDS-HT as well as  presents some very important updates regarding this condition that I have not seen being clarified in any other talk previously.


The video cannot be embedded here due to its privacy settings, so please visit vimeo to play the video.
To view the video on Facebook, click here.
To view his slides along with his talk, click here (only in IE or Firefox, does not play in Chrome) and play from slide#35.

I enumerate here some issues discussed in this talk and some take home points:

Link: Chronic Pain, Cancelled Plans and Friends



Every chronically ill person, especially young people, regularly faces situations where they have to say no to many plans, turn up late for things and cancel on others at the last moment. They regularly face the unpleasant prospect of having to explain these with truths, half-truths and lies, depending on the friend's closeness, receptiveness and capacity to understand the situation. They also lose friends and are often considered weird, especially so if the illness is invisible. This particular aspect among other problems related to social life causes a lot of distress because we also feel disappointed with ourselves, we feel bad for letting down/ annoying others, we feel bad for being misunderstood and we feel lonely.

This is a short article on how friends can show their support and understanding to a chronically ill person when they cancel plans.