Posts Tagged ‘Trisomy 13’
2020 SOFT Virtual Conference is coming in July
The 2020 SOFT Virtual Conference planning is underway and we are really excited to share our event with you. The team has been working hard to make sure our virtual event feels as much like home as our in-person events do. Because of the virtual format, we have stretched conference out a few days. It…
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Video: Routine Health Care for Children with Trisomy 13
What should parents and medical professionals know and expect as reasonable health standards for children with Trisomy 13? Dr. John Carey, MD and medical advisor for SOFT discusses current medical standards and expectations for children living with Trisomy 18 or Edwards Syndrome. From the 2013 TrisomyTalk.com series of medical webinars. Dr. John Carey, MD and…
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Video – Constipation 101
If you get any two or more parents of children with Trisomy together the conversation will inevitably turn to the subject of constipation. Constipation is one of the most common health issues that families of a child with a diagnosis of Trisomy 18, 13 or other related disorder face. Managing your child’s bowels becomes a…
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Attitudes Toward Hypothetical Uses of Gene-Editing Technologies
The following paper is an interesting article published recently in The CRISPR Journal. The main author, Erika Snure Beckman, performed this work for a Master’s degree while a genetic counseling student at Stanford University. She and her colleagues analyzed the views of parents of persons with trisomy 21, trisomy 18, and trisomy 13 syndromes toward the new gene-editing technologies. The…
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Common Problems of Babies with Trisomy 18 or Trisomy 13
A consistent list of problems and concerns has been reported by parents through the years. Viability of their newborn is their first concern, followed by decisions about management of care. Feeding difficulties and constipation are common, often lifelong problems; care of infants with these issues follows below.
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Medical Providers May Not Deny Medical Care Based on Disabilities
The New York Times reports: “Federal civil rights office rejects rationing medical care based on disability or age.” The U.S. Department of Health and Human Services’ civil rights office told medical providers on Saturday that they may not deny medical care to people on the basis of their disabilities or age during the coronavirus emergency.…
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Trisomy 13 – A Handbook for Families
When your physician first tells you that your baby may have trisomy 13 (Patau syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is “What is trisomy 13?” This book was written to answer some of these questions, to share insights of parents of children with trisomy…
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Perspectives on the Medical and Genetic Aspects of the Trisomy 18 & 13 Syndromes
Presented at the 2012 SOFT Conference, St. Louis Dr. Carey began by saying questions were welcomed. He also noted most participants were familiar with the basics of trisomy, so he would emphasize new information. The result was he completed about 10% of his forty prepared slides. The order of information that follows reflects the questions…
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The Care Book (English, Spanish, Portuguese)
Care of the Infant and Child with Trisomy 18 or Trisomy 13 was written for parents who are expecting, living with or remembering a child affected with these disorders. The greater portion of text covers problems and management of care of the live born infant and living child. It has been continually updated as new…
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2018 ACMG Conference
SOFT was represented at the 2018 ACMG (American College of Medical Genetics) Conference held April 10- 14, 2018 in Charlotte, NC. SOFT Attendee: Dr John C Carey, Medical Geneticist and Pediatrician, Primary Children’s, SLC, UT – SOFT Medical Advisor SOFT member exhibitors: Ann & Frank Barnes, parents of Megan (T18) 1985-2004 Rhonda Yarrington & 3…
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