About ME :)

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2 thoughts on “About ME :)

  1. Dear Tea-Lynn,

    I encountered your article on functional somatic syndromes & EDS via an Inspire forum thread, and wanted to compliment you on it. Your piece ties together the various issues as well as anything I have seen published.

    I wanted to ask, however, if you had seen the recent study done via Stanford’s sleep lab, that found that airflow limitations during sleep were universal among the EDS patients studied. I have long suspected that Upper Airway Resistance Syndrome might be an underlying cause of the sleep dysfunction described by Dr. Alan Pocinki, and attributed to autonomic dysfunction. My own interest has been reinforced this year, after I progressed from UARS to full blown apnea and was issued a BiPAP machine. It took a few months, but my fatigue and exercise tolerance are better than they have been in years. I have HEDS, C1-C2 instability, mast cell issues, hyperandrenergic autonomic dysfunction, etc., and am using jut about every possible conservative management strategy. PAP therapy has made a bigger difference to my overall ability to function than anything else.

    I bring this up in the hope that it might earn a footnote in the version of the article you hoped to publish in an academic journal. I had also been under the impression that a researcher on the Stanford EDS/sleep disorders study was now at Toronto, but can no longer verify this. If so, it seemed as if you might be well positioned to encourage him to pursue the topic and/or collaborate with him. I’ve pasted links to his article, and an overview of Upper Airway Resistance Syndrome below, in case it interests.

    With best wishes and thanks,

    Kirsten Sword

    In the unlikely event that you haven’t see Alan Pocinki’s suggestions on sleep & autonomic dysfunction in EDS:
    http://www.ednf.org/sites/default/files/Pocinki.pdf)

    Sleep-disordered breathing in Ehlers-Danlos syndrome: a genetic model of OSA. Guilleminault C, Primeau M, Chiu HY, Yuen KM, Leger D, Metlaine A. Chest. 2013 Nov;144(5):1503-11. doi: 10.1378/chest.13-0174. http://www.ncbi.nlm.nih.gov/pubmed/23929538,

    On Upper Airway Resistance Syndrome has been noted as a cause of the same spectrum of functional somatic symptoms as has EDS, and might in fact be a significant contributing factor in the EDS/hypermobile population. A general overview can be found here:
    Upper Airway Resistance Syndrome ,PCCSU Article | 07.01.11, By Olukayode Ogunrinde, MD; Herbert J. Yue, MD; and Christian Guilleminault, MD, BiolD
    http://69.36.35.38/accp/pccsu/upper-airway-resistance-syndrome?page=0,3

  2. Hi Tea-Lynn,
    Thank you for putting your story out there. I’m actually inquiring in regard to my 28 year old daughter with EDS. I was curious of your experience of experimenting with various forms of exercise? This is all foreign to me but I have always been successful in remedying any of my ailments with consistent exercise of various forms. I believe I am grasping the hyper-mobility issues of the joints but am still feeling optimistic that with careful forms of exercise if nothing else the surrounding connective tissue would be strengthened or stabilized, etc. The thought of utilizing pharmaceuticals is terrifying in my personal observations and experiences. I do not trust most physicians in regard to their lack of education in holistic methods but abundance in education of prescribing pharmaceuticals. I would love to see more info out there of people with EDS and their experiences with fighting this with healthier or holistic methods. I frankly haven’t found to many positive stories or outcomes. Any of your thoughts would most definitely be appreciated.
    Take care, Jerry

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