{"id":11489,"date":"2017-06-07T11:45:51","date_gmt":"2017-06-07T18:45:51","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11489"},"modified":"2025-12-29T11:47:12","modified_gmt":"2025-12-29T19:47:12","slug":"gaining-better-understanding-dm-susannah-savitsky-story","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/fr\/family-stories\/gaining-better-understanding-dm-susannah-savitsky-story\/","title":{"rendered":"Gaining a Better Understanding of DM: The Susannah Savitsky Story"},"content":{"rendered":"
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When Susannah Savitsky of Parrish, Florida, attended her first MDF Annual Conference<\/a>\u00a0she had no idea that it might help save her mother\u2019s life. \u00ab\u00a0I just kind of happened upon it, and I thought it would be interesting,\u00a0\u00bb says Susannah, who attended with her father and mother. Susannah\u2019s mother has myotonic dystrophy type 1 (DM1).<\/div>\n<\/div>\n
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An anesthesiologist who spoke at the conference \u00ab\u00a0gave a lot of good information about anesthesia and its effects on people with myotonic dystrophy,\u00a0\u00bb she said. \u00ab\u00a0He actually gave out his cell phone number and said, ‘If you ever have a question or your doctors have a question, you can call me.'\u00a0\u00bb<\/p>\n

That proved fortuitous, as Susannah\u2019s mother ended up needing several surgeries. \u00ab\u00a0My dad actually reached out to him [Dr. Neal Campbell] because my mom was having surgery, and the local hospital had questions about it. He was very helpful.\u00a0\u00bb (Access the DM\u00a0Anesthesia Guidelines.<\/a>)<\/p>\n

Finding Support<\/h2>\n

Susannah is a 48-year-old entrepreneur with her own real estate law practice. She also has two teenagers that keep her busy at home, and she helps care for her mother. Susannah also has DM1.<\/p>\n

She follows the MDF Facebook page and belongs to two MDF online support groups, one for patients and one for caregivers, now that she has become involved in caring for her mother, who is disabled from advanced DM1.<\/p>\n

She is busy juggling so much that she often can\u2019t tell if her fatigue is normal for her situation or a symptom of the DM. \u00ab\u00a0So much of what I see as symptoms of DM at this point in my life can be confusing. Is it DM or is it just aging? Is the daytime sleepiness because I\u2019m just being a bum and sitting on the couch, or is it that my body is tired from the disease?\u00a0\u00bb<\/p>\n

MDF, she says, has been a great resource for her. \u00ab\u00a0It\u2019s really nice to be able to share and bounce things off each other, to ask, \u2018Is this part of the disease?\u2019 or \u2018Does anybody else have this burning sensation in their legs?\u2019 or \u2018Has anybody tried this medication?\u2019<\/p>\n

She says, \u00ab\u00a0There isn\u2019t always information when you go to your regular doctor, so it\u2019s good to have that to help you fill in some of the blanks.\u00a0\u00bb<\/p>\n

Understanding CDM<\/h2>\n

Susannah says she wishes the DM community had been as fully developed as it is now back in 1998 when she was pregnant with her first baby.<\/p>\n

\u00ab\u00a0We were under the impression that the type of DM that was in our family\u2014the adult-onset form\u2014would be the one to affect any children we might have, and that by the time they got to the age where it might affect them, there would be a lot of resources, if not a cure.\u00a0\u00bb<\/p>\n

But no one had told Susannah and her husband, Jamy, that there was a serious, congenital-onset form of DM1 (CDM), that her baby could be born with it, and that a baby at risk for CDM should be delivered in a medical center equipped for high-risk births.<\/p>\n

\u00ab\u00a0I honestly didn\u2019t even know there was such a thing,\u00a0\u00bb Susannah recalls. Fortunately, Logan was born without complications and turned out not to have the DM1 genetic mutation.<\/p>\n

When she learned she was pregnant again in 2000, Susannah and Jamy decided to do prenatal testing to see if the baby was affected and, if so, to go to a major medical center for specialized care. Fortunately, that proved unnecessary, as baby Serena, like her brother, was unaffected by DM1.<\/p>\n

\u00ab\u00a0I was lucky it all worked out for me,\u00a0\u00bb Susannah says, \u00ab\u00a0but I was pretty angry at the doctors for not explaining why this was important.\u00a0\u00bb<\/p>\n

These days, she says, there\u2019s so much information available on the web and at conferences through groups like MDF that people can much more easily learn what they need to know.\u00a0Learn more about myotonic dystrophy and family planning.<\/a><\/p>\n

Helping Others<\/h2>\n

\u00ab\u00a0I try to be supportive when people are having a bad day or need to vent,\u00a0\u00bb Susannah says of her participation in online MDF support groups. Recently, through the caregiver group, she reconnected with a long-lost friend of the family who lives in Tampa. And she\u2019s reached out to support newcomers.<\/p>\n

\u00ab\u00a0The other day, somebody posted on the caregiver page that they were new to the group and lived on the east coast of Florida. I logged in and said, \u2018I\u2019m on the west coast. If you ever want to talk, I\u2019m two hours away, so I\u2019m relatively local.\u2019\u00a0\u00bb<\/p>\n

She has found that the support and knowledge that has come from her participation in the MDF community has helped her to connect with people with other disorders, too.<\/p>\n

\u00ab\u00a0I have a good friend whose adult daughter, in her 30s, has something neurological that they haven\u2019t quite narrowed down,\u00a0\u00bb she said. \u00ab\u00a0My friend is having trouble understanding her daughter\u2019s decisions and thought patterns. I\u2019ve talked with her about the depression that comes with a [disabling] disease. It\u2019s very frustrating to feel like you\u2019re losing your independence.\u00a0\u00bb<\/p>\n

Budgeting Energy, Planning Ahead<\/h2>\n

Susannah says she\u2019s learned to budget her energy by thinking about it this way: \u00ab\u00a0It\u2019s like a bank. You only have so much money in the bank. If you use your energy to climb stairs, that\u2019s energy you may not have for, say, carrying the laundry. Part of this disease is realizing that there are just so many units that you can use of energy, and if you use it for this, you can\u2019t use it for that. So pick and choose your battles. I can hire somebody to mop my floors and clean my bathrooms, or I can do it, but that ruins my weekend, because I spend the rest of the weekend sore and exhausted. It\u2019s worth it to me to pay somebody else to do that.\u00a0\u00bb<\/p>\n

She also says planning for the future helps her feel more in control. \u00ab\u00a0Every family\u2019s got something. It might be cancer or heart disease. At least with myotonic dystrophy, we know ahead of time some of what\u2019s in store for us, so we can plan accordingly. When we bought a house, we bought one without stairs because I didn\u2019t want to be doing stairs as I got older. We know what we\u2019re up against, so we can prepare. We need to make sure that we have everything in place.\u00a0\u00bb<\/p>\n

Read more community stories about members of the\u00a0MDF community<\/a>.<\/p>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11490,"template":"","class_list":["post-11489","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories\/11489","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=11489"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}