{"id":70319,"date":"2023-06-14T13:23:29","date_gmt":"2023-06-14T19:23:29","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=70319"},"modified":"2023-06-23T16:32:47","modified_gmt":"2023-06-23T22:32:47","slug":"dealing-with-loeys-dietz-syndrome-a-genetic-connective-tissue-disorder","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/dealing-with-loeys-dietz-syndrome-a-genetic-connective-tissue-disorder\/","title":{"rendered":"Fabric of life holds firm in the face of Loeys-Dietz syndrome, a genetic connective tissue disorder \u00a0"},"content":{"rendered":"
<\/div>
\"Graphic
Graphic artist Lauren Atherton with husband Brett. Lauren has survived two heart surgeries that repaired damage to the aorta caused by Loeys-Dietz syndrome, a rare genetic disorder. Photo courtesy Lauren Atherton.<\/figcaption><\/figure>\n

For her first 28 years, Lauren Atherton seemed firmly in control of her life. She earned a degree in fine arts and graphic design in her native Michigan, where she worked successfully in advertising for five years. After moving to Colorado, Atherton built a freelance business with clients in the Boulder-Denver area. In 2017, she got married.<\/p>\n

Unbeknownst to Atherton, however, her body held a silent threat \u2013 one that was to nearly wrest her life from her. A rare genetic disorder called Loeys-Dietz syndrome was steadily weakening the connective tissue in her body. The breaking point came on a December day in 2017. A mere six months after her marriage, with the next stage of her life stretched before her, Atherton lay on a hospital operating table, undergoing open heart surgery.<\/p>\n

Atherton had suffered an aortic dissection<\/a>: a tear in the inner wall of the aorta, the body\u2019s largest artery and its crucial conveyor of blood. The rupture causes severe blood loss and is highly lethal if it is not treated quickly: up to 50% in the first 48 hours<\/a>.<\/p>\n

\u201cAortic dissection is incredibly dangerous,\u201d said Dr. Amber Khanna<\/a>, a cardiologist with the UCHealth Adult Congenital Heart Disease \u2013 Anschutz Medical Campus Clinic<\/a>, who helps to care for Atherton. \u201cMany people do not survive them, and any delay in surgery is associated with risk.\u201d<\/p>\n

A heart repair and life changes due to Loeys-Dietz syndrome<\/strong><\/h2>\n

Fortunately, surgeons repaired Atherton\u2019s dissection within four hours after she was rushed to the hospital. She slowly recovered, but the near catastrophe was only the beginning of profound changes in her life. Loeys-Dietz syndrome left her vulnerable to another dissection \u2013 more on that later \u2013 and its looming presence took a mental toll. But the trials also spurred Atherton to make positive changes in her life. She\u2019s taken her design work in a new direction and made strong contributions to organizations helping others with Loeys-Dietz syndrome as well as Marfan Syndrome<\/a>, a closely related genetic condition.<\/p>\n

The turn began during a six-month recovery from the dissection surgery. \u201cI focused on getting better, walking every day and watching what I was eating and drinking,\u201d Atherton said. As time went on, she slowly rebuilt her freelance work but also broadened her life purpose. She joined the Loeys-Dietz Foundation (LDSF) Strategic Advisory Board<\/a> and volunteered to help redesign the organization\u2019s website and educate others with the condition. After the LDSF joined forces with The Marfan Foundation<\/a>, the latter asked Atherton to do paid design work.<\/p>\n

The two organizations are now clients of Atherton\u2019s own company, HeartSpark<\/a>, which she launched in February 2020. After years of design work with for-profit companies, her clients are now exclusively non-profits. The aortic dissection threatened her heart, but her near-death experience also convinced her to follow it.<\/p>\n

\u201cI want to be excited about what I\u2019m creating and partner with people who have a good purpose behind what they\u2019re doing,\u201d she said. \u201cMy surgery propelled me to pursue what had been a thought at the back of my mind.”<\/p>\n

\"Following
Following her first surgery, Lauren opened HeartSpark, a graphic design business that serves non-profit organizations. Photo by EB Combs, The Whistler and the Well.<\/figcaption><\/figure>\n

Sudden aortic dissection and a trip to the brink of death<\/strong><\/h2>\n

Neither aortic dissection nor Loeys-Dietz syndrome held any place in Atherton\u2019s mind on that life-changing December day in 2017. She was at Empower Field at Mile High, helping a friend do some social media work for a Denver Broncos game. The two had gone below the stadium when Atherton felt a pop at the back of her throat. She then started getting a headache, which she assumed was a migraine and left the stadium early.<\/p>\n

\u201cI felt tired but didn\u2019t think much of it,\u201d Atherton said. She later felt pain between her shoulder blades and back \u2013 a symptom of an aortic dissection<\/a> \u2013 but again chalked it up to fatigue.<\/p>\n

Her symptoms worsened the next day. Atherton did some errands and fainted after she returned home. She let her husband, Brett, know about it but stayed at home for an afternoon meeting. A short while later, she fainted again. This time Brett called an ambulance, which took her to the hospital. She arrived, turning gray and then blue. Providers at first suspected a blood clot in her lungs.<\/p>\n

\"Lauren,
Lauren and Brett in front of the house they recently purchased. Photo courtesy of Lauren Atherton.<\/figcaption><\/figure>\n

In reality, Atherton\u2019s Loeys-Dietz disorder had weakened and stretched her aorta. An aneurysm, or bulge, formed on the vessel and then ruptured, tearing the inner wall. Blood rushed in, depriving the rest of Atherton\u2019s body of oxygen. Her providers diagnosed the emergency and rushed her to the operating room for surgery to repair the damage.<\/p>\n

Atherton was oblivious to it all. \u201cI didn\u2019t know until the next day I\u2019d had open heart surgery,\u201d she said. She was also unaware of her close brush with death. \u201cI thought we\u2019d just fix it and move on.\u201d<\/p>\n

Loeys-Dietz diagnosis portends future problems<\/strong><\/h2>\n

Far from it. Her surgeon suspected a connective tissue problem in someone as young as Atherton and ordered a genetic test that confirmed Loeys-Dietz syndrome. The diagnosis was both shocking and puzzling: none of Atherton\u2019s family members have the genetic mutation responsible for the disorder.<\/p>\n

There was more bad news. The emergency surgery took Atherton out of immediate danger, but she had another aneurysm, this one on the aortic root, which governs blood flow to the coronary arteries. That presented the prospect of another surgery.<\/p>\n

Her reaction was understandable: \u201cI\u2019m not ready to think about that yet,\u201d she recalls saying. \u201cI went through surgery and am excited to move on. I don\u2019t have to worry about it anymore.\u201d<\/p>\n

\"Dr.
Dr. Amber Khanna, an adult congenital heart disease specialist at UCHealth, helps Atherton manage the symptoms of Loeys-Dietz syndrome. Photo by UCHealth.<\/figcaption><\/figure>\n

No, you do, her surgeon countered. The reality was that Atherton was going to have to face another surgery at some point. In the meantime, she would have regular imaging tests to gauge the threat presented by the aneurysm on the aortic root.<\/p>\n

Addressing the mental health challenges of medical trauma<\/strong><\/h2>\n

Atherton went on to recover from the surgery, change her career course and launch her new company. But about a year after the aortic dissection, she realized she also had to face the mental burden imposed by Loeys-Dietz syndrome and the surgery. She sought help from a therapist.<\/p>\n

\u201cI was grieving the loss of this life I thought I would have as a newly married woman,\u201d Atherton said. \u201cI survived a traumatic event, but I hadn\u2019t thought about it in that way. It was life-changing, working through so much stuff and being guided through that process rather than trying to figure it out myself. I got the tools to keep moving forward. It was one of the biggest transformations that happened to me.\u201d<\/p>\n

Atherton also credits Khanna for her expertise in helping her address both the physical and mental challenges of her connective tissue disorder.<\/p>\n

\u201cShe knows the medicine, symptoms and science,\u201d Atherton said, \u201cbut she also inquired about the mental toll. She made me feel like, \u2018You see me. You really understand what someone with Loeys-Dietz syndrome goes through.\u2019\u201d<\/p>\n

For many patients, Khanna said, medical trauma \u201cis equally stressful and life-impacting as other forms of trauma. We are working hard to learn how to better support our patients who experience it.\u201d<\/p>\n

With mental health assistance, patients like Atherton are capable of achieving \u201cpost-traumatic growth,\u201d Khanna added.<\/p>\n

\u201cThat means taking a traumatic experience and making positive life changes and finding something good,\u201d she said. \u201cLauren has taken a traumatic event and turned it into something that has many positive aspects to it.\u201d<\/p>\n

Another aortic surgery<\/strong><\/h2>\n

A little over three years after her first open-heart surgery, Atherton finally had to accept the necessity of the aortic root repair. Images showed the aneurysm had slowly grown, and her surgeon recommended a proactive procedure to head off the risk of another rupture. She absorbed the news and reluctantly agreed. She and Brett traveled to Michigan to see her parents, then began the task of selecting a surgeon.<\/p>\n

The surgeon who had saved her in 2017 had moved out of state, but recommended thoracic and cardiac surgeon Dr. Brett Reece<\/a>, head of the UCHealth Comprehensive Thoracic Aortic Program<\/a> and a specialist in aortic root replacement. Atherton met Reece, was impressed with his experience, kindness and expertise and chose him to perform the surgery.<\/p>\n

Reece successfully replaced both the aortic root and arch at UCHealth University of Colorado Hospital<\/a> in March 2021. Thanks to the proactive approach, Atherton had a much shorter three-month recovery time, and she credits the hospital team for helping to ease her fears and anxieties about the procedure. She also benefited from cardiac rehabilitation<\/a>, which helped her recover her strength, find her limits and build camaraderie in \u201ca little bonded unit\u201d with others recovering from heart problems.<\/p>\n

Savoring life amid uncertainty<\/strong><\/h2>\n

A little over two years after the aortic root surgery, Atherton said she \u201cfeels great that I can get on with my life.\u201d She continues to grow HeartSpark. Under Khanna\u2019s care, she takes medications to protect her heart. Still, successful surgeries don\u2019t change the fact that Atherton has a genetic disease that is not going away. She has an abdominal aneurysm that must be monitored, along with regular imaging tests of the rest of her body\u2019s vessels. Her disease also increases the risk of problems in other parts of her body, which underscores the importance of having a multidisciplinary team at UCHealth to address both her surgical and medical needs, Khanna said.<\/p>\n

\u201cThe tissue will continue to weaken,\u201d she said. \u201cThere is no significant treatment to stop that process.\u201d<\/p>\n

Atherton acknowledges that reality. \u201cIt\u2019s always in the back of your mind,\u201d she said. \u201cI\u2019m constantly aware of my body. I wonder why I am stuck in this body that is not going to get better but only degrade over time.\u201d She added, however, that at 34, she has an awareness of her physical fragility that many people don\u2019t grasp until they are much older.<\/p>\n

\u201cI understand that my relationship with my body now may allow me to live longer and have a balanced approach with it,\u201d Atherton said.<\/p>\n

In the meantime, she savors the work she is doing. She and Brett have a new house and are enjoying opportunities to travel. Lauren Atherton doesn\u2019t downplay the loss and hardship she\u2019s experienced since the traumatic day in 2017, but chooses to focus on what lies ahead.<\/p>\n

\u201cI\u2019m living parts of that life I always thought I would have,\u201d she concluded. \u201cI\u2019m maintaining contentment and concentrating on the little things to look forward to.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

For her first 28 years, Lauren Atherton seemed firmly in control of her life. She earned a degree in fine arts and graphic design in her native Michigan, where she worked successfully in advertising for five years. After moving to Colorado, Atherton built a freelance business with clients in the Boulder-Denver area. In 2017, she […]<\/p>\n","protected":false},"author":2143,"featured_media":70325,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[7],"tags":[3512,3300,130],"class_list":["post-70319","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-stories","tag-heart-and-vascular-care-cardiovascular","tag-heart-surgery-treatments","tag-rehabilitation"],"acf":[],"yoast_head":"\nFabric of life holds firm in the face of Loeys-Dietz syndrome - UCHealth Today<\/title>\n<meta name=\"description\" content=\"At 28, Lauren was diagnosed with Loeys-Dietz syndrome, a genetic connective tissue disorder. 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