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Thread: Genetic Testing

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    Default Genetic Testing

    My doctor called today and offered to have me join in a new study group at the Childrens Hospital I go to. They are trying to find more links to lupus and genetics. They're taking my blood and both of my parents to see how my genes differ from theirs to learn more about genes that play a part in lupus. Me and my mom are really interested to see what they find with all of it. Has anyone else done something like this?

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    Ritzbit,
    This is cool, and I hope that it helps the researchers to show if there is something hereditary with AI diseases.
    I had genetic testing done in Texas, but it was when the docs thought that I had a disease that would show up in the mitochondria,
    called spinocerebellar ataxia. They ruled that one out.
    The docs said that they would have liked to also test some immediate family members, but my mother, aunt and uncle who had
    dealt with these symptoms have all passed on.
    You are very lucky to get this done as part of a research study - it is HUGELY expensive. My insurance company just about had a cow
    over my bill!!
    Hugs,
    Marla

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    no ritbiz but i wish i had i have inherited my lupus from my mother if they had these tests when i was young at least i would have known that i had the genetic disposition we now think that my eldest daughter sarah may also have inherited this off of me even though her test were negative her symptoms are exactly the same as mine and my mothers.so it looks like genetics can play a part in some groups of suffers. hugs good luck kim l

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    no I haven't but I think this is such an important step in proving what we already know as AI patients - there is some sort of familial link and it seems to be on our mother's side.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    That's interesting, never heard of it and never had it done.
    "With gentle hands and the heart of a fighter, I am a survivor!" - Reba McEntire

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    hi ritz,

    that is so cool. please keep us posted on any results. maybe, this process will help your mom learn, understand, and accept more about lupus and how it is affecting your life.
    Phyllis

    share a smile today

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    The weird thing is no one except some distant cousin on my dads side has lupus in my family. I think my doctor was saying that she wanted to see if they could find out if there was a genetic reason behind me spontaneously getting it? I think thats what she said but I could be wrong. My dad oddly has a lot of the same issues as me, but hasn't had insurance until about a month ago so he nevers goes to the doctor so Im kind of interested to see if there's a link to him. The only reason we get to do it is because the researchers got money to begin their trial so the tests are basically going to be free, but only if its started next week which is why I had to move my appointment up a week to this coming Monday. I have no idea how long test results like that will take to get back but I will let everyone know when I know more about it =)

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    For me, it took a long time for the results to come back. There is only one commercial lab in the country that can handle genetic testing - called Athena, somewhere on the east coast. It was kind of cool - they sent a special nurse to my school to collect several vials of blood. We used the school nurse's office - she was fascinated.
    The vials were placed in a special cooler and quickly flown to the Athena lab. The report that they sent my neuro was thick - I still have the copies that he gave me.

    Since you will be part of a university study, they might have genetic testing facilities on the campus. That might make the results come back much faster.
    Keep us informed about your adventure!
    Hugs,
    Marla

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    So I got all my blood taken for the testing today. Found out while I was there I didnt do well on my 6 min walk test like I thought I did =( I might need some test where they have to go in and look at my lungs or something. I was at 4 standard deviations under whats normal, which doesnt sound very good. So my doctor has to find someone who can look at my lungs who is an adult doctor not a pediactric. The word schleroderma was thrown out there. And during the appointment we got a call that our family friend was killed today =( she is my brothers car pool to school and my mom takes home her son who is my brothers friends. We've known them for like ten years. Her and her husband were found dead in their home today. It doesnt look good...probably murder suicide =( Its so upsetting they were such good people and had the sweetest little girl. I've babysat for them before.I cant believe this happened to them..=( my mom was really upset. I cant wrap my brain around this. I dont know how things like this happen to such good people. I feel like up until now I lived in the mind set that things like this wouldnt happen to people I knew, but this is the second time in the past few months something terrible like this has happened.

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    Oh Ritz,

    I am so sorry that you have to deal with such horrible news.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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