{"id":11502,"date":"2017-01-24T11:56:24","date_gmt":"2017-01-24T19:56:24","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11502"},"modified":"2025-12-29T12:06:34","modified_gmt":"2025-12-29T20:06:34","slug":"every-body-counts-zenica-sanford","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/fr\/family-stories\/every-body-counts-zenica-sanford\/","title":{"rendered":"Every Body Counts: Zenica Sanford"},"content":{"rendered":"
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\u00ab\u00a0My kids was my reason for participating in a phase I\/II trial of the experimental drug IONIS-DMPKRx,\u00a0\u00bb says Zenica Sanford, a 34-year-old mother of four who has adult-onset DM1 and lives in Idaho Falls, Idaho.<\/div>\n<\/div>\n
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Zenica participated\u00a0in the University of Utah trial site in Salt Lake City. (To learn more about this and other studies and trials, go to Myotonic\u2019s\u00a0Study and Trial Resource Center<\/a>\u00a0on the Myotonic website.)<\/p>\n

Three of Zenica\u2019s children also have myotonic dystrophy (DM). Her oldest child, now 12, was diagnosed with juvenile-onset DM1 a year ago, and her 9-year-old son was diagnosed with the juvenile-onset form of the disease at age 2. Her 3-year-old daughter, Andelyne, has the severe, congenital-onset form of DM type 1 (DM1) and is in a study of that condition at the University of Utah. (See\u00a0Health Endpoints and Longitudinal Progression<\/a>\u00a0in Congenital Myotonic Dystrophy in the Current Studies and Trials section of the\u00a0Study and Trial Resource\u00a0Center<\/a>.)<\/p>\n

Learning of the\u00a0Diagnosis<\/h2>\n

Zenica didn\u2019t realize she had DM herself, though, until 2006, when she was 25 years old and pregnant with her second child.\u00a0\u201cMy brother had been diagnosed, and his doctor recommended that I be tested,\u201d she remembers, although her only symptom back then was some cramping in her hands.\u00a0\u201cI\u2019m hoping something can help them \u2013 or even myself,\u201d Zenica says. \u201cI want to keep up,\u201d she says. \u201cI don\u2019t want the kids to think of Mom as sick and in\u00a0bed.\u201d<\/p>\n

Zenica was one of the very first people to enroll in the Ionis Pharmaceuticals clinical trial to test the first drug that targeted\u00a0the underlying genetic defect that causes DM1. Participating in a clinical study was a positive experience for her.<\/p>\n

\u201cI had heard horror stories about muscle biopsies, but they weren\u2019t that bad,\u201d Zenica says. \u201cIt hurts, but my expectations of it were worse. They used local anesthetics, and it wasn\u2019t as painful as I had expected.\u201d The electromyograms felt like a \u201ctingle\u201d in her leg muscle.\u00a0\u201cEverybody at the trial site was kind, concerned and caring,\u201d she says. But getting to know study coordinator Dr.\u00a0Missy Dixon has been particularly satisfying. \u201cShe\u2019s usually there with me during every procedure,\u201d Zenica says. \u201cI\u2019ve gotten to know her really well, medically and personally. She\u2019s great. It\u2019s always nice to have a comforting\u00a0face.\u201d<\/p>\n

The trial required two overnight hospital stays at the University of Utah. During other visits, the trial reimbursed her for a hotel room conveniently situated near her Utah relatives and convenient to the trial site.\u00a0The drug trial required tests of physical function, filling out detailed questionnaires, cardiac exams, two muscle biopsies, and some electromyograms, which entail inserting a needle into a\u00a0muscle.<\/p>\n

The Next Chapter<\/h2>\n

Zenica looks forward participating in future DM1 clinical trials,\u00a0but she notes that with DM, you may need family support and a certain amount of stamina, and that you need to do your homework on details like reimbursement.\u00a0\u201cFind out everything about the time commitment and what they will reimburse,\u201d Zenica advises those considering being in a study or trial. In her drug trial, everything has been reimbursed, including mileage, hotel stays and food. However, the research study in which her 3-year-old is participating only reimburses for a particular hotel, one that isn\u2019t convenient for\u00a0them.<\/p>\n

There were times when bad weather and the December holiday season\u00a0made the three-and-a-half-hour drive to Salt Lake City particularly stressful, Zenica says, but her husband kept encouraging her, and she has had his support with child care.\u00a0\u00ab\u00a0You need to have family support. But if you have the time and the support, go for\u00a0it.\u00a0\u00bb<\/p>\n

Would you like to participate in a research study or clinical trial? Learn more about the process today! Visit the Myotonic\u00a0Study and Trial Resource\u00a0Center<\/a>.<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11503,"template":"","class_list":["post-11502","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories\/11502","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories"}],"about":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/types\/family-stories"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media\/11503"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media?parent=11502"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}