TV Video: Hannah - Health Insurance Story. View her fight for insurance coverage for the SCOT Trial, with David Becker, ISN Assistant News Guide.
Tackle Scleroderma! Join/Shop/Donate
SCLERO.ORG by the nonprofit International Scleroderma Network (ISN) is a full-service nonprofit charitable foundation providing stellar research, support, education and awareness
Search sclero.org:

Patient & Caregiver Stories Main Menu
(English) Stories by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 ;2009
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
LaVonne: Surviving Mother of a Daughter with MCTD
I have no faith in doctors anymore.

Pink Rose, In Loving Memory 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.

To Contact the Author
Lavonne
New email address needed.
Old Email Prefix: lmills
Story posted 9-17-00
Email updated 3-25-02
Story edited VH1: JTD 8-21-03
Email note posted 01-24-05 SLE

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
LINKS
Heart Involvement Mixed Connective Tissue Disease
This story is featured in the book Voices of Scleroderma Volume 1
This Story is Featured in Voices of Scleroderma Volume 1
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 Rose ThompsonJudith 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!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
 
Go to Lee: Undifferentiated Connective Tissue Disease (UCTD)
 
SCLERO.ORG is brought to you by the nonprofit International Scleroderma Network (ISN). The ISN is a full-service nonprofit scleroderma charitable foundation providing stellar research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
  1. Post a message in Sclero Forums!
  2. Email: isn@sclero.org
  3. English Email Form
  4. Español Email Form
  5. Italiano Email Form
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
United States
Toll Free Hotline in U.S.
Hours: 9am-3pm CST only.
Please leave a complete message, in English.
1-800-564-7099
Direct Line
1-952-583-5735
We are also known as the Scleroderma from A to Z web site.
© Copyright 1998-2009 International Scleroderma Network
All Rights Reserved