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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 Senior Member

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    came acros a mention of Joubert's Syndrome and noted this interesting info - not sure if it would ever relate to EDS


    Ciliopathy from wikipedia
    Research has revealed that a number of genetic disorders, not previously thought to be related, may indeed be related as to their root cause. Joubert syndrome is one such disease. It is a member of an emerging class of diseases called ciliopathies.

    The underlying cause of the ciliopathies may be a dysfunctional molecular mechanism in the primary cilia structures of the cell, organelles which are present in many cellular types throughout the human body. The cilia defects adversely affect "numerous critical developmental signaling pathways" essential to cellular development and thus offer a plausible hypothesis for the often multi-symptom nature of a large set of syndromes and diseases.

    Currently recognized ciliopathies include Joubert syndrome, primary ciliary dyskinesia (also known as Kartagener Syndrome), Bardet-Biedl syndrome, polycystic kidney disease and polycystic liver disease, nephronophthisis, Alstrom syndrome, Meckel-Gruber syndrome and some forms of retinal degeneration.[4]
  2. Allyson

    Allyson Senior Member

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    Last edited: Dec 11, 2013
  3. Allyson

    Allyson Senior Member

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    I just read a short Liz Taylor biog and almost every illness symptom she had fits with EDS -fainted , easy bruising , twisted colon, intestinal problems appendectomy, slipped and crushed several vertebrae, broke a bone in her foot, spinal fusion, accident prone, sleep problems, susceptible to frequent illnesses, sinus issues, back and neck pain, bronchitis, haemorroids, heat intolerance, wild fluctuations in BP, ? 2 miscarriages and she was even born with a spinal defect; she was a chain smoker (nicotine is a vasoconstrictor)

    .Her insurance premiums for moves were throughtthe roof and she missed the fatal plane trip with Mike Todd due to illness. Last real movie was made at about age 56.

    There are 2 pics of her showing her hypermobile elbow of course the biographer claims it was all psychosomatic !


    A
  4. Allyson

    Allyson Senior Member

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  5. Allyson

    Allyson Senior Member

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  6. Snowdrop

    Snowdrop Senior Member

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    Hi Allyson
    I have been following this thread. Very interesting.
    I have POTS and I can say although I don't get regular IV saline infusions (I would never be able to afford this at a naturopath)

    I have had a few saline infusions when I've had a migraine and gone to the Emergency dept of the hospital.
    They give me saline and have also given me a vitamin bag just for good measure. :)
    I always feel very well for a day or two then it's back to my (not very well) normal. :(
    I don't know what the long term implications would be having this done long term.
    SD
    Allyson likes this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Many get regular saline infusions. The long term implications are simply that you have to keep doing them to have the benefit--they don't "cure" anything. :(

    Sushi
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  8. Snowdrop

    Snowdrop Senior Member

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    I'm not well but being dependant on an IV forever more doesn't sound like a 'solution' to me either. ;)
  9. Allyson

    Allyson Senior Member

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    apparently they work better for some than for others - f they are heling you it may be that you have low blood volume Snowdrop - have you had that tested?


    Ally
  10. Allyson

    Allyson Senior Member

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  11. Allyson

    Allyson Senior Member

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    POTS is one of the most troubling symptoms for many with EDS

    for those who have had or are considering a 48 hour halter monitor test -

    Patch Outperforms Holter for Prolonged Heart Rhythm Tracking

    ( Maybe you will gets some sleep with a patch too !)

    http://www.sciencedaily.com/releases/2014/01/140102152336.htm

    A
  12. Allyson

    Allyson Senior Member

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    Hypermobility in action

    Sadly 2 of the sisters died young - aged 33 and 35

    ???? dissected aortic arch - just guessing



    note the POTsy facial features - large eyes, thin upper lip, attached earlobes


    anyone know any more about them please?

    A
  13. Allyson

    Allyson Senior Member

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  14. Allyson

    Allyson Senior Member

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  15. Allyson

    Allyson Senior Member

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    Sorry i cannot copy the pic here but it is truly amazing - show how important and extensive connective tissue is in the body - if they could do this transplant with our stretchy veins it might be close to a cure.

    it is pinned at the top of this fb page if anyone interested wants they can see it there
    https://www.facebook.com/groups/455374384560623/


    Ghost Heart ! This is a " Ghost Heart ". It has been decellularized, leaving only connective tissue. The organ can then be reseeded with a patients own cells to regenerate it so it can be transplanted without fear of tissue rejection. SHARE if you like this - Dr. Najeeb


    or if you click on DrNajeeb above it takes you to his page where it is currently top posting - 13 January 2014

    and check the size of those major blood vessels - if they stretch out there is a lot of room for blood pooling....
    Last edited: Jan 12, 2014
  16. Allyson

    Allyson Senior Member

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    Indeed apparently 2 of the sisters sadly died young - at 32 and 35 respectively
  17. Allyson

    Allyson Senior Member

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  18. Allyson

    Allyson Senior Member

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  19. Allyson

    Allyson Senior Member

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    EDS and genetics articles - thanks to Mark Martino, EDNF
    From NIH http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome one can find labs doing which genetic testing (sequencing, deletion/duplication, prenatal, and/or carrier testing):

    Gene Tests Arthrochalasia http://www.ncbi.nlm.nih.gov/.../lab/clinical_disease_id/2070

    Gene Tests: Ehlers-Danlos Syndrome, Classic Type, COL1A1-Related http://www.ncbi.nlm.nih.gov/.../clinical_disease_id/319558

    Gene Tests: Ehlers-Danlos Syndrome, Classic Type, COL5A1-Related http://www.ncbi.nlm.nih.gov/.../clinical_disease_id/319188

    Gene Tests: Ehlers-Danlos Syndrome, Classic Type, COL5A2-Related http://www.ncbi.nlm.nih.gov/.../clinical_disease_id/319189

    Gene Tests: Ehlers-Danlos Syndrome, Hypermobility Type http://www.ncbi.nlm.nih.gov/.../lab/clinical_disease_id/3263 (don't know what these are testing, actually — I assume the COL3A1 HM mutation, but I'm not sure)

    Gene Tests: Ehlers-Danlos Syndrome, Kyphoscoliotic Form http://www.ncbi.nlm.nih.gov/.../lab/clinical_disease_id/3038

    Gene Tests: Ehlers-Danlos Syndrome, Musculocontractural Type http://www.ncbi.nlm.nih.gov/.../clinical_disease_id/319374

    Gene Tests: Ehlers-Danlos Syndrome Type IV http://www.ncbi.nlm.nih.gov/.../lab/clinical_disease_id/2067

    Gene Tests: Ehlers-Danlos Syndrome Type VIIA http://www.ncbi.nlm.nih.gov/.../clinical_disease_id/319158

    Gene Tests: Ehlers-Danlos Syndrome Type VIIB http://www.ncbi.nlm.nih.gov/.../clinical_disease_id/319159
    RosieBee likes this.
  20. Allyson

    Allyson Senior Member

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