{"id":11718,"date":"2016-01-29T04:31:17","date_gmt":"2016-01-29T12:31:17","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11718"},"modified":"2025-12-30T04:33:48","modified_gmt":"2025-12-30T12:33:48","slug":"every-body-counts-susannah-savitsky","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/fr\/family-stories\/every-body-counts-susannah-savitsky\/","title":{"rendered":"Every Body Counts: Susannah Savitsky"},"content":{"rendered":"
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Participating in a study to determine the best ways to measure how people are affected by DM has been \u201cworth it all day long,\u201d says Susannah Savitsky, a 46-year-old attorney from Parrish, Fla. \u201cIt\u2019s had a huge positive influence on my life.\u201d<\/div>\n<\/div>\n
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It\u2019s been very, very easy,\u201d Susannah says. \u201cThere\u2019s one day of testing, a Tuesday. I fly up [to the National Institutes of Health in Bethesda, Md., from Florida] on Monday, and I fly home Wednesday. They have a travel agency that does all the planning and arranging. They pay for the travel and for a nice hotel. I make a little vacation out of it.\u201d She\u2019s had time to do some sightseeing in nearby Washington, D.C., on one trip and plans to take the whole family next time she goes to the study\u00a0site.<\/p>\n

Susannah has adult-onset DM1, and so far her symptoms have been minimal. On the other hand, her 69-year-old mother, who has the same disorder, has experienced severe weakness, as well as serious cardiac and respiratory problems. She has an implanted pacemaker-defibrillator and is on invasive ventilation at home, all of which has helped convince Susannah to take\u00a0action.<\/p>\n

\u201cI want this to be the last generation to go through this,\u201d she says. \u201cI want to do whatever I can to end this. I think the end of myotonic dystrophy is in sight, and I want to be part of\u00a0it.\u201d<\/p>\n

Being in the study, Susannah says, has been informative and rewarding. \u201cSo many times, medical professionals have not heard of myotonic dystrophy,\u201d she says. \u201cWhen you tell them about it, they get that glazed look in their eyes and say, \u2018You look OK to\u00a0me.\u2019\u201d<\/p>\n

At NIH, it\u2019s a different story. \u201cYou\u2019re surrounded by people who understand the disease and who can answer your questions. It\u2019s awesome. There are so many things that happen with DM, and you wonder if it\u2019s just that you\u2019re getting older or if it\u2019s the progression of the disease. Even if they don\u2019t have the answers, the people at NIH can say, \u2018This is what we\u2019re seeing with other\u00a0patients.\u2019\u201d<\/p>\n

Susannah believes that \u201ceveryone should do what they can, for themselves and for the disease. Even if nothing comes of it, you get a sense of not sitting back and taking it, of doing something productive. You\u2019re doing something positive in a negative situation, taking action against the disease. They don\u2019t have answers yet, but these studies are working toward\u00a0answers.\u201d<\/p>\n

Join a registry, or sign up for a study or trial\u00a0today.<\/a><\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11490,"template":"","class_list":["post-11718","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories\/11718","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\/11490"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media?parent=11718"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}