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The Family Health History post…

14 Nov

Adoptees without an updated family health history are at risk.  The adoption industry does not care.  If they did, they would have done something about it in the last 50 years. 

Neither have I seen any concerted effort to push for reforms in this area from the adoption community, despite the desire by many to adopt.  Instead they accept the risks on behalf of their children, instead of challenging the norm.  Similar to how I see the reaction to adoptees not having the right to their original birth certificate, verbal support but that’s it. 

When families get together this Thanksgiving you are supposed to take the time to update your family health history.  Do it – it’s important – write it down, but can we also start the conversation about what we can do in the coming year for adoptees in the future and for children and grandchildren of adoptees?

My disease discussed by a professor at the Mayo Clinic.  I have it in my heart and one of my main coronary arteries dissected.  I also have an aneurysm in another artery and the disease in at least 4 other arteries.  This disease strikes at any age.  

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10 Comments

Posted by on November 14, 2011 in Adoption, adoptive parents

 

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10 responses to “The Family Health History post…

  1. dpen

    November 15, 2011 at 2:31 am

    Very interesting. Thank you. Do you know any members of your first family that have this?

    Its not really a well known disease and the experts are still learning. Thankfully the mayo clinic is on it and trying to learn more about it.

    In terms of adoption…boy, a family history is more then relevant in your case. I bet you wonder if you had only known if some of your suffering could have been lessened…..

    Keep getting the word out there and let all the “you just need to take good care of yourself, you really don’t need to bother your first family or hurt your adoptive family to know about yourself” crew.

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    • The adopted ones

      November 15, 2011 at 2:57 pm

      Dpen – I am the first in the family to be diagnosed with the disease but it is not suprising because most doctors don’t know about the disease. I was lucky in that the doctor teaching the other doctors doing my angio spotted it. I have multiple first degree relatives who have passed away from early age heart attacks.

      How is your brother?

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  2. Melynda

    November 15, 2011 at 2:48 am

    OK – so you have convinced me to get a complete and up-to-date family health history together and send it to my daughter. I have been wrestling this since she has not indicated she wants any contact with me. I have wondered if it would be appropriate but getting to know your story, it is entirely appropriate, even if she doesn’t ever want to have anything to do with me. I don’t necessarily have her physical mailing address, just her parents. Should I send it to her via email or just send it to her parents place in the hopes that she gets it? And how often should I update it for her? And what kinds of information should I include on it? I think I remember reading about what is recommended somewhere on your blog. Now if I could only get my little brain to remember where….

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    • The adopted ones

      November 15, 2011 at 3:01 pm

      Melynda – I will come up with some tools – I don’t know but if you think her parents would be okay with it then a hard copy would probably be best – plus the fact that they are older and would recognise the value. It bothered me when I was young because I knew the value but I was also healthy as a horse so I could dismiss the qualms.

      You also need to do it for your other children. For you too. A document that is pulled out and updated when somebody is diagnosed.

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  3. cb

    November 15, 2011 at 10:47 am

    I am hoping to have inherited my heart from my bfather. Heart problems run in my maternal bfamily – my bmother died before the age of 40 from a heart attack, 3 uncles have pacemakers. I do know at least that if I did go to hospital with chest pains that I will be taken more seriously because of the family history – many women’s heart symptoms can be ignored because doctors don’t believe they can be having heart attacks.

    Funnily enough, I do have a minor congenital heart condition (ASD/ASA) which seems to be unrelated to my maternal family history, it is more the type of heart condition that just happens.

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  4. cb

    November 15, 2011 at 11:16 am

    Btw very interesting video. I do remembering hearing somewhere, as he stated, that it may be a lot more common than first thought but is very rarely diagnosed. Another disease that is apparently quite common yet very rarely diagnosed (usually after women have multiple miscarriages) is antiphospholipid or Hughes syndrome.

    Btw AO do you belong to a FMD support group? Just asking out of interest, no particular reason.

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    • The adopted ones

      November 15, 2011 at 3:04 pm

      Yes, I belong to a support group – the main reason I came on the internet was to learn about this disease and find support. It helped but right now I am ignoring them because it is having the opposite reaction making me aware and stressed and I am trying the denial of reality system – bury my head in the sand…

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  5. shadowtheadoptee

    November 20, 2011 at 2:49 pm

    Sometimes we need to hide our heads in the sand; need a break from our reality. It’s the only way we can deal with it. Too much “support” can be depressing, if you knnow what I mean?

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  6. shadowtheadoptee

    November 20, 2011 at 2:54 pm

    Don’t know where the last part of that comment went, so I’ll try again. How about a dellusional trip to Hawaii? I’ll meet you there. CB and DPen can jin us. We’ll lie on the beach, with cold drinks in our hands, containing umbrellas in the, of course, and a very handsome, and muscular Hawaiian man, young man I might add, will rub oil all over our bodies. We wont worry about skin cancer, because tht’s just a lie they made up to scare us away from lying in the sun all day.

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    • The adopted ones

      November 20, 2011 at 4:09 pm

      I love Hawaii – still missing hitting a few of the islands but they are so beautiful. I will join you on the beach anytime…

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