{"id":11764,"date":"2015-03-10T05:29:11","date_gmt":"2015-03-10T12:29:11","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11764"},"modified":"2025-12-30T05:31:43","modified_gmt":"2025-12-30T13:31:43","slug":"adapting-lifes-challenges","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/es\/family-stories\/adapting-lifes-challenges\/","title":{"rendered":"Adapting to Life’s Challenges"},"content":{"rendered":"
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As a child growing up in South Dakota, Teresa Schmertman suffered from daily headaches – and that wasn\u2019t her only complaint. \u201cI had pain and stiffness in my hands,\u201d she recalls. Because of trouble with her eyes she wore glasses, and had braces on her teeth. Her doctors put her on tranquilizers, because they didn\u2019t know what else to do. \u201cThey were grasping at straws,\u201d she says, \u201ctrying to figure out why I didn’t feel good.\u201d<\/div>\n<\/div>\n
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Today, Teresa is a wife, mother, and paralegal professional, living and working from her home in Plano, Texas. And she now knows that what became a lifelong struggle with discomfort and disability was due to myotonic dystrophy (DM) that was finally diagnosed when she was 18 years old.<\/p>\n

The diagnosis of DM1 was a shock but not a complete surprise. Teresa\u2019s two uncles had suffered from DM, and her grandfather died of a heart attack that was probably related to the disease. But the belief in her family was that whatever might be wrong with its men, the condition wasn\u2019t hereditary, and women didn’t seem to be affected.<\/p>\n

As Teresa matured and her afflictions multiplied, her mother decided that the time had come to explore whether they might be linked to the family condition, and she scheduled an appointment with a neurologist. \u201cMy mother didn’t want to believe it, but nothing seemed to be helping,\u201d Teresa says today. The neurologist, however, had few doubts. He took one look at Teresa, and from the family history and the shape of Teresa\u2019s face announced almost immediately that she had myotonic dystrophy. A muscle test confirmed his diagnosis. Teresa\u2019s mother was also tested and learned that she had DM.<\/p>\n

\u201cWell, that explained why I couldn\u2019t ever keep up with my siblings when I was riding my bike.\u201d Teresa says. \u201cSuddenly it all made sense.\u201d<\/p>\n

Eventually, two of Teresa\u2019s four siblings –\u00a0a brother and a sister –\u00a0would display symptoms of DM, beginning in their 30s. And her sister\u2019s son –\u00a0born before the family was aware of the condition –\u00a0would display many symptoms from a young age. \u201cIt just shows how it gets worse with every generation,\u201d Teresa says.<\/p>\n

Living With DM<\/h2>\n

\u201cThe diagnosis was like having the rug yanked out from under me,\u201d Teresa recalls. \u201cI was 18 years old, finally on my own, going to college. I went through several emotional weeks, alternating between anger, self-pity, and the stubborn refusal to let the diagnosis get me down.\u201d<\/p>\n

In fact, through Teresa\u2019s twenties, the disease made itself felt only in gradual changes. \u201cYou live your life and you adapt,\u201d she says.<\/p>\n

In 2002, when she was 33 years old and living in Minnesota, she married Doug Schmertman, an engineer. The couple decided not to have children because of Teresa\u2019s hereditary condition. But after a few years, they began to think about adoption. Her brother had adopted two boys from Ethiopia, and Teresa and Doug decided to follow suit, falling for school-aged brothers, Muluneh and Sebsebe, who wanted to be adopted together.<\/p>\n

\u201cWe knew we had a lot of love to give and they\u2019re the sweetest boys ever,\u201d Teresa says. The couple chose older boys because Teresa knew that she wouldn’t have the strength to care for younger children. And from the start, they knew Doug would have to be very involved with raising the boys –\u00a0and\u00a0he has been, supportive in childrearing as in every aspect of the marriage.<\/p>\n

Over the years the couple was raising their boys, Teresa\u2019s DM began to affect her mobility more seriously. \u201cYou go along for a while, and gradually you understand that there\u2019s one more thing you can\u2019t do,\u201d she says. There came a time when she could no longer wear high heels. She began to fall with increasing frequency. For the last two years, she\u2019s been in a wheelchair.<\/p>\n

Recently, Teresa and Doug made a long-planned move from Minnesota to Texas to take advantage of its warmer climate. Teresa was concerned at first that she wouldn’t be able to find work, but she soon found employment through a former coworker. She works at home as a contractor about fifteen hours a week (which is about right, she says). Sometimes it\u2019s hard to be stuck at home, but because of her disease, she needs a warmer environment than she would find in most offices and she needs other conveniences home can offer. Working at home, she can control her time. \u201cI need to rest a lot,\u201d she says.<\/p>\n

Finding Myotonic<\/h2>\n
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In 2010, while still living in Minnesota, Teresa learned that Myotonic was sponsoring an informational conference in Minneapolis, and she and her family decided to go. \u201cIt was so close to home, we thought \u2018why not?\u2019\u201d she recalls now.<\/p>\n

What she heard that day kicked off a growing engagement with Myotonic and its work.\u00a0She has made monthly donations to\u00a0Myotonic\u00a0since 2011<\/a>\u00a0and now honors her parents by making donations on their anniversaries and birthdays as well as Mother\u2019s Day and Father\u2019s Day. \u201cMy parents have most everything they need, and what they want most is healthy children,\u201d she says.<\/p>\n

Teresa also launched a community fundraising project, CURE, which stands for \u201cCreating Unstoppable Research Efforts.\u201d Reaching out to an extended network of family and friends, she began a letter-writing campaign encouraging donations via the Myotonic website, raising money from eight states and three countries and organizing a Dine Out for DM fundraiser at a local Buffalo Wild Wings restaurant.<\/p>\n

\u201cBut I\u2019ve learned its not really about the money, she says. It\u2019s about a passion for the cure. And that\u2019s where my passion lies –\u00a0a cure for the disease –\u00a0second only to my passion for my family. I want a cure for myself –\u00a0and for everybody else.\u201d<\/p>\n

She tries to go to the national Myotonic Annual Conference every year. Her parents now join her. \u201cAnd my baby brother comes too –\u00a0he\u2019s a huge advocate even though he does not have the disease himself.\u201d (Of course, the whole family is affected by the disease through the members who do suffer from it, Teresa says.)<\/p>\n

She finds the conferences inspiring. \u201cYou meet people who\u2019ve been exactly where you are. It\u2019s so uplifting to learn about the research –\u00a0people out there devoting their careers to find a cure for your disease. They are doing that for me. That\u2019s very humbling and inspiring. There\u2019ve been so many advances since I was diagnosed. The researchers are amazing people and I am so grateful to them.\u201d<\/p>\n

The high point of Teresa\u2019s involvement in Myotonic\u2019s work came during the\u00a02014 Myotonic Annual Conference in Washington, DC<\/a>, where she joined the Myotonic on Capitol Hill\u00a0and lobbied\u00a0US Senators John Cornyn of Texas and Amy Klobuchar of Minnesota in support of Myotonic\u2019s work. She also had the honor of presenting a Myotonicaward to Senator Klobuchar, who introduced\u00a0a bill to support and expand research into the muscular dystrophies. \u201cThat was such an uplifting and rewarding experience,\u201d Teresa says,\u00a0\u201cperhaps the most rewarding moment of my life.\u201d<\/p>\n

Over the long years since her diagnosis, Teresa has gradually come to understand that while she lives with this disease, it is not her identity. \u201cI\u2019m not sick, my body is,\u201d she asserts. \u201cMy wheelchair doesn’t define me –\u00a0it\u2019s just a tool, like a pair of glasses. I can\u2019t say I accept this disease, but I do accept that I have to battle it. You have to be stubborn because you have to fight every day. But I can be free in my heart. To me that realization is super powerful.\u201d<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11765,"template":"","class_list":["post-11764","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/family-stories\/11764","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/family-stories"}],"about":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/types\/family-stories"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media\/11765"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media?parent=11764"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}