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HCM inheritance (historic)


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  • HCM inheritance (historic)

    Following is a dutch transcript of reseacher findings in the Netherlands. It appears that some inherited variations of HCM have their first genetic footprint in certain christian (mennonites) circles in the dutch province of Friesland (Frisia). A number of these 16th century people later emigrated to other countries, including the later USA. Unrelated to this specific item, some assume that 25% of all HCM sufferers are distant relatives.

    Interesting to note that while i am not a mennonite (i am a member of the reformed churches) my last name 'schaafsma' denotes Frisian origin (as my great-grandfather comes from that region). However, HCM for me supposedly comes from my mothers side, which is from another side of the country. So for me the Frisian connection may not apply...

    Still, this may give some clues to some HCM'ers as to the origins of our maladie ('y' or 'ie' ). Maybe for us the term 'dutch disease' (remember the European peace movement of the eighties) may get a whole new meaning

    Following is the article in dutch. It may easily translate in google or babylon, though results are more funny than usefull. I have provided a full though not literal translation below the original dutch text.

    Hartafwijking komt vaker voor bij doopsgezinden

    Gepubliceerd op maandag 09 februari 2004

    AMSTERDAM (ANP) - Een Hollandse variant van de hartaandoening HCM blijkt vaker voor te komen onder doopsgezinden uit de beweging van de 16e-eeuwse voorman Menno Simons. Dit concluderen onderzoekers van de academische medische centra in Amsterdam (AMC), Rotterdam en Maastricht.

    De genetici onderzochten zestig Nederlandse, vijf Amerikaanse en twee Duitse dragers van de hartkwaal hypertrofische cardiomyopathie (HCM) die een bepaalde genetische afwijking gemeen hebben. De Amerikanen bleken allemaal af te stammen van Friese doopsgezinde emigranten die via Duitsland en Rusland in de VS terecht zijn gekomen. De Nederlandse patiënten wonen voornamelijk in Noord-Nederland, waar de Friese ex-priester Simons zijn beweging begon.

    HCM-patiënten hebben een ongewoon dikke hartspier, die vooral bij inspanning de uitgaande bloedstroom belemmert en tot fatale hartritmestoornissen kan leiden. Bij eenderde van de mensen onder de 35 jaar die sterven aan plotselinge hartdood, is HCM de oorzaak. Nederland telt ongeveer 32.000 dragers, die overigens lang niet altijd klachten krijgen.

    De onderzochte dragers hebben een specifieke genetische afwijking, die buiten Nederland weinig voor lijkt te komen. Omdat het een erfelijke kwaal is, willen de onderzoekers van alle dragers uitvinden in welke familierelatie ze tot elkaar staan en hoe het hun voorouders is vergaan. De eerste voorouder met de afwijking moet volgens de onderzoekers rond 1200 hebben geleefd.


    Heartdisease more common among mennonites

    Amsterdam, monday, february 9th 2004

    There is a significant occurance of a genetically specific type of HCM among members of a certain christian group, the mennonites, originating from Frisia, Netherlands. This movement first came into being in the 16th century. Thus argue researchers from dutch university hospitals in Amsterdam, Rotterdam and Maastricht.

    60 Dutch, 5 Americans and 2 Germans were reviewed, all bearers of HCM sharing a common, specific gene connected to the disease . All Americans reviewed are descendants from Frisian mennonites who came to the USA through Germany and Russia. All dutch bearers mainly live in the northern Netherlands, close to the mennonite roots.

    The reviewed carriers of the gene have a specific genetic code, that appears largely confined to the Netherlands. Researchers would like to trace their (remote) family ties and common ancestors back as far as possible. It is assumed that the first ancestor with the specific genetic code would have been around in 1200 (middle ages).
    \"Hope is disappointment postponed\"

    Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

    Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

    Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

    Meds (current) sotalol, dabigatran, furosemide.

  • #2
    I know there are some flaws with the translation, but below is what www.freetranslation.com came up with.


    Heart deviation comes often for by christening sense

    Published on Monday 09 February 2004

    AMSTERDAM (ANP) - A Dutch variant of the heart condition HCM appeared often for to come under christening sense from the movement of the 16e-eeuwse leader Menno Simons. This conclude researchers of the academic medical centers in Amsterdam (AMC), Rotterdam and Maastricht.

    The genetici examined have sixty Dutch, five American and two German bearers of the heart disease hypertrofische cardiomyopathie (HCM) that a particular genetic deviation rabble. The Americas appeared all finished to descend from Frisian christening sense emigrants that come be correct via Germany and Russia in the U.S. The Dutch patients live mainly in North-the Netherlands, where the Frisian ex-priest Simons its movement began.

    HCM-patients have an unusual dikke heart muscle, that especially by effort the outbound blood stream hinders, and until fatal heart rhythm disturbances can lead. With eenderde of the men under the 35 year that die at sudden heart death, is HCM the cause. The netherlands counts approximately 32,000 bearers that otherwise long always complaints do not get.

    The examined bearers have a specific genetic deviation that to come appears outside the Netherlands little for. Because one hereditary disease is, want the researchers of all bearers invent in which family relations they till each other stand and how the their ancestors is decay. The first ancestor with the deviation must have lived according to the researchers around 1200.

    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.


    • #3
      Love that:
      an unusual dikke heart muscle, that especially by effort the outbound blood stream hinders.
      I think that Netherlanders referring to our hearts as having a dike in them is a scream!



      • #4
        Language is an interesting thing. There is much more to it then just translating word for word. The phraseology and construct of the sentences themselves are quite different from one language to another. There are also changes from one area to another, even speaking the same language.

        Think how easy it is to tell an Englishman, from an American, from an Australian – and they are all speaking the same language. In fact, how about a Bostonian, from a Texan, from a Californian, from a Louisianan. But I think there is help on the way.

        In the proverbial old days people tended to stay in one location and many were born, lived and died in a twelve mile area. Today there are nation wide media (radio, TV, movies) and they all speak a certain style of the language that is becoming more and more universal – doing away with the colloquial speech of small areas. Also, world trade has become a large portion of each countries existence, creating the need for a universal language. With the start of the English colonial system, to today’s telecommunications and computers where most of the information is in English – to pilots all over the world having to communicate with the towers in English, A universal language is in fact emerging.

        English is taught all over the world as either a first or second language, which has done much to aid international communication and commerce. I remember being in Tokyo Railroad Station in 1953-4, less then a decade after the end of World War Two, and I was able to find English speakers to help me find my way through the maze of tunnels. Today I would expect there would be no trouble communicating almost anywhere in the world.

        So let’s all keep our native tongues as close to our hearts as our individual heritages, but for the sake of all concerned, let’s talk to each other in English on the board. Private communications of course may be in any language the communicating parties understand, but on the board let’s all understand each other and our conditions as much as possible. The idea of speaking Italian to an Italian was a great idea, but it left out too many people who read the board to help understand their own condition or to offer help to others.

        Personally I love to see all the countries of our members. In the final analysis we are all trying to better our and others lives, fighting in the common cause against this condition. It is a lovely thought for the New Year.


        • #5
          The automated translator did a relatively good job . However, i really think my partial translation was better . So lets indeed follow Burtons advice and do not leave it up to webbased translators. I will edit my post to provide a full translation, but just for fun, leave the dutch inside - after all, who wouldn't want to have a 'dike' inside :P
          \"Hope is disappointment postponed\"

          Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

          Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

          Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

          Meds (current) sotalol, dabigatran, furosemide.


          • #6
            I was tested for this gene, and just got my results the other day. I hoped and prayed that I would have it but I didn't. Thanks for the info, it was very enlightening, plus I got a chuckle too!

            Take care
            It's not what you gather, but what you scatter that tells what kind of life you have lived.

            Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.