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Thread: Hi! My names Ari - I have SLE + secondary sjogren's + thrombophilia

  1. #1
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    Default Hi! My names Ari - I have SLE + secondary sjogren's + thrombophilia

    Hey guys

    Im a 28yo mum living in Australia... Mackay, in queensland. I was diagnosed officially in 2005/2006 after the birth of my daughter. A giant tumour (40cm+ diameter) and multiple pulmonary embolism almost ended my life... then the tumour ruptured and came even closer to ending it once again. It took a full uterine hysterectomy to save my life. So my daughter is a precious only child.

    During the pregnancy I developed a rash over my nose, cheeks, eyebrows and chin... that should have been a giant neon warning sign of the dramas that were to come. But the doctor said he thought it was psoriasis... I wish he had had a clue... my test results also came back with a big warning sign for thrombophilia... he never even mentioned it to me, i read the results after the birth, months later and was enraged. How could he neglect to tell me and take measures to protect me from the possibility of blood clots.

    Anyway, my daughter was born during an emergency caesar after i went into labour at 28weeks, the tumour was much too big, it had pushed her literally up into my ribs, her head was jammed into a rib and had grown in a form around it... surprisingly with physio and a lot of attention from us, her head is relitively normal in shape But the caesar was long and dangerous, i lost a lot of blood.

    Anyway, enough of my disorganised rambling

    I now take my three plaquenil tablets a day and really have mild symptoms considering... its more a nuisance than anything. I developed secondary sjogren's recently, which has been a big blow

    Im looking forward to becoming a part of this forum and getting to know everyone I find there is no better information than what others can give from their experiences.

    Ari

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    Hi Ari, welcome to WHL! Sounds like you've had quite some time of it. You'll find plenty of friends here who have much in common. Marla recently went to a conference on sorgens (sp). She has several posts you should read. They are very helpful.

    Anyway as I'm having a sleepless night I thought to say hi and welcome,
    nonna

  3. #3
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    Hello! It is good to meet you. While I can't say my experience has been as colorful as yours, I can still offer a virtual hug.

  4. #4
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    Hi Ari,
    Welcome to WHL! You'll find a lot of useful information here. Read through the threads that interest you and read the stickys at the top of each forum. If you check through Laurie's Lounge, you'll find the reports that I've been posting on the Sjogren's Conference. Feel free to jump into some of our conversations and ask questions or just chat. It sounds like your little girl must be about 4 years old. I have a 4 1/2 year old grandson who is such a handful we've nicknamed him the wild man.
    Hugs,
    Marla

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