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Lessons from ME/CFS: Finding Meaning in the Suffering
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Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, Nov 12, 2012.

  1. Allyson

    Allyson *****

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  2. Allyson

    Allyson *****

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  3. Allyson

    Allyson *****

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  4. Allyson

    Allyson *****

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    ( EDS is not thought to be rare tho now)


    A
    Last edited by a moderator: Apr 14, 2014
  5. Allyson

    Allyson *****

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  6. Allyson

    Allyson *****

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  7. Allyson

    Allyson *****

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    Genetics of Valvular Heart Diseas


    Abstract

    Valvular heart disease is associated with significant morbidity and mortality and often the result of congenital malformations. However, the prevalence is increasing in adults not only because of the growing aging population, but also because of improvements in the medical and surgical care of children with congenital heart valve defects. The success of the Human Genome Project and major advances in genetic technologies, in combination with our increased understanding of heart valve development, has led to the discovery of numerous genetic contributors to heart valve disease. These have been uncovered using a variety of approaches including the examination of familial valve disease and genome-wide association studies to investigate sporadic cases. This review will discuss these findings and their implications in the treatment of valvular heart disease.

    Genetics of Valvular Heart Disease

    S LaHaye, J Lincoln, V Garg - Current Cardiology Reports, 2014

    ... LDS has a similar phenotype to Marfan syndrome and interestingly is caused by mutations in
    TGF-β receptors 1 and 2 (TGFBR1 ... tissue dysplasias caused by mutations in a variety of collagen
    genes are also characterized by MVP and include Ehlers-Danlos (EDS), Stickler, and ...



    Current Cardiology Reports April 2014, 16:487

    A
  8. Allyson

    Allyson *****

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    Clinical Rheumatology April 2014
    Heart rate, conduction and ultrasound abnormalities in adults with joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type
    Abstract
    Joint hypermobility syndrome (JHS) and Ehlers-Danlos syndrome, hypermobility type (EDS-HT) are two clinically overlapping heritable connective tissue disorders strongly associating with pain, fatigue and other secondary aspects. Though not considered a diagnostic criterion for most EDS subtypes, cardiovascular involvement is a well-known complication in EDS. A case-control study was carried out on 28 adults with JHS/EDS-HT diagnosed according to current criteria, compared to 29 healthy subjects evaluating resting electrocardiographic (ECG), 24-h ECG and resting heart ultrasound data. Results obtained in the ECG studies showed a moderate excess in duration of the PR interval and P wave, an excess of heart conduction and rate abnormalities and an increased rate of mitral and tricuspid valve insufficiency often complicating with “true” mitral valve prolapse in the ecocardiographic study. These variable ECG subclinical anomalies reported in our sample may represent the resting surrogate of such a subnormal cardiovascular response to postural changes that are known to be present in patients with JHS/EDS-HT. Our findings indicate the usefulness of a full cardiologic evaluation of adults with JHS/EDS-HT for the correct management.



    Heart rate, conduction and ultrasound abnormalities in adults with joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type
    F Camerota, M Castori, C Celletti, M Colotto, S Amato… - Clinical Rheumatology, 2014
    Abstract Joint hypermobility syndrome (JHS) and Ehlers-Danlos syndrome, hypermobility type (EDS-HT) are two clinically overlapping heritable connective tissue disorders strongly associating with pain, fatigue and other secondary aspects.



    A
  9. Allyson

    Allyson *****

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  10. Allyson

    Allyson *****

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  11. Allyson

    Allyson *****

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    here is the link

    http://forums.phoenixrising.me/index.php?threads/dr-francomano-on-chiari-malformation.30233/

    Joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type: constructing a rehabilitative approach
    C Celletti, M Castori, G Morico, F Camerota - International Journal of Clinical …, 2014
    EhlersDanlos syndrome hypermobility type (EDS-HT) is a heritable connective tissue disorder mainly characterized by joint hyper mobility, chronic/recurrent pain, joint instability complications and minor skin changes [1]. Recently, a group of international experts ...

    here is the link
    Last edited: May 14, 2014
    Esther12 likes this.
  12. Allyson

    Allyson *****

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    Autonomic symptom burden in the hypermobility type of Ehlers-Danlos syndrome: A comparative study with two other EDS types, fibromyalgia and healthy controls
    D Wandele Inge, C Patrick, P Wim, R Steven… - Seminars in Arthritis and …, 2014
    Aim This study provides insight into the profile and importance of autonomic symptoms in the hypermobility type (HT) of Ehlers-Danlos Syndrome (EDS). The impact of these symptoms is put into perspective by comparing with fibromyalgia (FM) and two other EDS types. ...


    A
  13. Allyson

    Allyson *****

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    The genetic basis for aortic aneurysmal disease
    Heart 2014;100:916-922 doi:10.1136/heartjnl-2013-305130


    Review

    Aortic disease review series


    Athanasios Saratzis

    Matthew J Bown

    click on this link for article

    http://heart.bmj.com/content/100/12/916.short


    A
    Last edited: May 26, 2014
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson likes this.
  15. Allyson

    Allyson *****

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    Built Wrong

    someone else who passed away from EDS

    SO many are undiagnosed we do not know the real mortality rates
    another reason to check out EDS/POTS

    http://jottify.com/works/being/

    A
  16. Allyson

    Allyson *****

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    EDS is known cause of Aneurysms and in mentioned n text

    will chase up the link if it is working - thanks for letting me know\

    those links were just to authors and have been removed now


    Ally
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't see EDS mentioned in the text. If one of the genes mentioned is an "EDS gene," it would be good to mention the connection in your post.

    Sushi
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  18. Allyson

    Allyson *****

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    EDS was in e clip I got - it is hard to post the clip and the link - did you read the full text? I have not been e to access full text yet

    just sent this Australian ABC Radio National clip - thanks Leanne - who notes the EDS facial features on the trapeze artist with " chronic fatigue" - soft stretchy skin, heart shped face large eyes, attached earlobes etc


    http://www.abc.net.au/radionational/programs/lifematters/the-chronic-fatigue-of-circus-life/5478904?WT.mc_id=Innovation_Radio-RadioNational-LifeMatters|SpenserInwoodTheChronicFatigueOfCircusLife_FBP|abc



    A
  19. Allyson

    Allyson *****

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    is this the article you mean sshi in aneurysms

    http://heart.bmj.com/content/100/12/916.short

    you need to buy the full text it seems

    Aneurysms are a very common cause of death in EDS sadly - My cousin had one that ruptured and left her in
    not good shape at all
    SHe never even knew she had one sadly until it ruptured suddenly spontaneously

    Ally
  20. Allyson

    Allyson *****

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