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LaVonne: Surviving Mother of a Daughter with MCTD

I have no faith in doctors anymore.

I'm the mother of an only daughter who had mixed connective tissue disease (MCTD). She died in March 2000 at thirty-five years of age. She was diagnosed with MCTD in 1996.

She went into an emergency room in California on March 16 with a little fluid around her heart. They sent her home with a shot of morphine and prednisone, and told her to come back if she got worse. She slept all day and could not feel any pain to know she was getting worse. Her husband decided to take her back to the hospital around four o'clock that afternoon.

They got two miles from their house and she said, "Kev, something is seriously wrong," and fell over in the Jeep. She had no pulse. By the time the ambulance arrived to take her to the hospital, her heart had stopped. They got it going and drained off all the fluid from around her heart. Both the medics and her husband, Kevin, used cardiopulmonary resuscitation (CPR) but unfortunately, the fluid had prevented it from working. So she was, basically, brain dead by the side of the road, and they had only six miles more to get to the hospital.

The reason I'm writing this is to say that if any of you out there have MCTD, lupus, scleroderma, etc., please don't take your symptoms lightly. I have no faith in doctors anymore. I can't understand why they didn't keep my daughter in the hospital that morning when she went into the emergency room at two o'clock in the morning. They could have simply monitored her for twenty-four hours, and they would have seen she was in trouble with the extra fluid accumulating around her heart. Then, they could have drained it off like they did later, and she would still be with us today.

She had a wonderful career going at age thirty-five and was teaching the dental hygiene program at UCSF as well as doing research there also.

I miss her so much, and I also miss the fact that she didn't get to give me grandchildren. That's what she wanted most, to have a baby, which they were planning.

I would like to hear from anyone else out there that has been diagnosed with MCTD. I would like to know more about it and your symptoms.

Thank you, and God bless each and every one of you.

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This Story is Featured in Voices of Scleroderma Volume 1

The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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