\t\t\t<\/p>\n \t\t\t\t\t\t <\/p>\n \tRelated story \t\t\t\t\t<\/p>\n \t\t\t\t\tFrom Solar Glasses to Pinhole Projectors, Here\u2019s How To Watch the Eclipse Safely With Your Kids\t\t<\/p>\n <\/span><\/p><\/div>\n \t\t<\/a><\/p>\n<\/article>\n \t \n\tNote: Jessie is an actual patient who was compensated for her time.<\/sup><\/p>\n \n\tJessie\u2019s TED journey started back in 2021, a year after she was diagnosed with Graves\u2019 disease, an autoimmune thyroid condition frequently associated with TED. Jessie\u2019s initial eye symptoms began with minor changes in vision and mild eye bulging that she noticed in the mirror. She initially wrote them off, attributing them to factors like mold in the school building where she worked, eye fatigue from screen time, or even her Graves\u2019 disease. \u201cIt wasn\u2019t major symptoms, just minor things,\u201d Jessie recalls. \u201cI was just having issues getting my eyes to focus due to double vision.\u201d At the time, Jessie was working closely with her endocrinologist, but she didn\u2019t know that up to 40% of patients with Graves\u2019 disease may also develop TED.<\/p>\n \n\tIt wasn\u2019t long until Jessie\u2019s symptoms began to interfere with her career as a teacher, her family life, and taking care of her children. At the time, she was teaching English and experienced pain from staring at a screen all day, and, despite wearing prism lenses prescribed by her eye doctor to help manage eye misalignment and double vision, as well as blue light glasses, it \u201cbecame so challenging just to do my job.\u201d Jessie would often need to pause her teaching to close her eyes for a few seconds.<\/p>\n \n\tBut Jessie felt like the worst impact was the effect her TED symptoms began having on her family life. \u201cWe\u2019re very active as a family,\u201d she says. \u201cAlways on the go. But at that point, I had to lay down and tell the kids \u2018no,\u2019 or tell them \u2018mom needs a break.\u2019 I wasn\u2019t feeling like myself\u2026I couldn\u2019t cook dinner because I had to lay down after dealing with eye pain all day. There was a lot of mom guilt.\u201d<\/p>\n \n\tJessie\u2019s turning point came after a night that should have been fun\u2014she drove herself and two friends to a concert three hours away. But even after pulling over and resting her eyes, Jessie realized her double vision was still interfering with her ability to see clearly enough to continue driving safely.<\/p>\n \n\tThis impact on her daily activities became the reason she decided to share her eye symptoms with her thyroid specialist, and Jessie started the conversation at her next appointment. The doctor\u2019s response was immediate. She informed Jessie about the link between Graves\u2019 disease and TED, which requires its own treatment plan.<\/p>\n \n\tJessie\u2019s doctor referred her to a TED Specialist<\/a>\u2014who instantly took notice of Jessie\u2019s bulging eye and put her on a path toward a formal TED diagnosis. Jessie originally resisted the diagnosis, noting that she\u2019d come across TED in her research but believed her symptoms were \u201ctoo mild\u201d to be that. However, she soon realized that the impact on her daily life was significant enough to take action.<\/p>\n \n\tNote: Will is an actual patient who was compensated for his time.<\/sup><\/p>\n \n\tWill\u2019s initial symptoms began around 2022, and included swelling around one eye that was so minimal he \u201calmost disregarded it.\u201d <\/sup>But disregarding the symptoms wasn\u2019t easy to continue when the swelling became more noticeable, particularly to Will\u2019s wife and others. Will\u2019s wake-up moment came when someone he\u2019d met for the first time at a party pointed out the swelling. Will shared, \u201cI was also running a restaurant so I was on social media all the time promoting, and a lot of people would make comments that affected my confidence.\u201d<\/p>\n \n\tAt first, an eye specialist wasn\u2019t able to identify what was causing his symptoms. Will\u2019s eye bulging was subtle and primarily presented by swelling of the tissues around his eyes, so his symptoms were not initially recognized as TED. Because Will was a younger patient, and lab testing indicated that he didn\u2019t have any thyroid dysfunction, like Graves\u2019 disease, his symptoms were dismissed as temporary\u2014which delayed his diagnosis and treatment. His experience reiterates the importance of connecting with a specialist who has experience diagnosing a rare condition like TED.<\/p>\n \n\tWill accepted the outcome of that visit with the eye specialist, feeling almost relieved that he\u2019d done the right thing by getting his symptoms checked and being told it was okay. \u201cIt\u2019s something I wanted to hear,\u201d Will told SheKnows. \u201cAnd I just went on with my life.\u201d<\/p>\n \n\tAfter a period when his symptoms seemed to come and go, Will\u2019s eye symptoms worsened. The swelling of the tissue around his eyes increased and his confidence continued to be affected. He also started to experience double vision, which made driving difficult and started to impact his daily routines. He began wearing non-prescription glasses in an effort to create a visual distraction\u00a0so the swelling in his eyes was less noticeable.<\/p>\n \n\tAs Will\u2019s symptoms worsened, Will\u2019s wife pushed for more answers. She took the initiative to seek advice from friends in healthcare, identifying ophthalmologists with expertise and pushing firmly for specialist care. Her persistence directly led to a TED diagnosis and, ultimately, a recommended treatment. \u201cMy wife is my champion and willing to go the extra mile,\u201d Will shared.<\/p>\n \n\tThe TED Specialist Will met with immediately recognized Will\u2019s symptoms as TED. He informed him that, despite its name, TED does not affect the thyroid, but instead the muscle and fat behind the eyes; and it can occur in people even when thyroid function is normal. His formal diagnosis was approximately three years after eye symptoms began.<\/p>\n \n\tWhile Jessie and Will\u2019s stories appear different on the surface, they are similar in a number of key ways. Both of their journeys began with smaller signs and symptoms that were easy to dismiss despite the way they affected their daily lives over time. And both of them had to advocate for themselves, while searching for the right specialist.<\/p>\n \n\tFor Jessie, her experience showed the importance of acting quickly when something feels off. \u201cDon\u2019t wait,\u201d she says. \u201cThink about your own body, how you feel and what you know about your norm, and use that as a jumping off point for advocacy.\u201d Her advice underlines how important it is for those experiencing even one core sign or symptom of TED, like eye bulging or double vision, to talk to their doctor. \u201cIt can get worse over time,\u201d Jessie adds, \u201cso that advocacy is the most important thing you can do.\u201d \n\tWill\u2019s experience offers an example of how people living with TED may have periods of stability before symptoms progress, relapse, or worsen. He volunteered similar advice, adding that it\u2019s important to \u201cbe a champion of your own health. You can\u2019t be satisfied with simple answers because it\u2019s what you want to hear.\u201d<\/p>\n \n\tPaying attention to symptoms, seeking timely attention, and taking action if you\u2019re noticing new or worsening symptoms or a greater impact on daily activities is crucial to addressing TED symptoms.<\/p>\n \n\tBoth Jessie and Will decided to move forward with TEPEZZA\u00ae<\/sup> (teprotumumab-trbw), an infusion medicine and the first FDA-approved treatment for adults with TED, regardless of disease activity or how long it\u2019s been since you were diagnosed.<\/p>\n \n\tIMPORTANT SAFETY INFORMATION:<\/strong><\/p>\n \n\tWhat is the most important information I should know about TEPEZZA?<\/strong><\/p>\n \n\tInfusion reactions can happen during or within 24 hours after your infusion of TEPEZZA. If you have a reaction while receiving TEPEZZA, your doctor or nurse will slow or stop your infusion and treat your reaction. If you have a severe infusion reaction, your doctor may stop your treatment completely.<\/p>\n \n\tSee additional IMPORTANT SAFETY INFORMATION below.<\/strong><\/p>\n \n\tLike many people starting a new medicine, Will had questions about how TEPEZZA works. He was initially hesitant because he thought it was a treatment for thyroid disorder, but his doctor clarified that TEPEZZA targets a root cause of TED and was designed to block the body\u2019s response to this autoimmune condition that can cause symptoms.*<\/sup> Will was also initially concerned about receiving an infused treatment, but was able to make the infusions work well with his schedule. This reframing, along with his treatment experience, increased Will\u2019s comfort with his treatment plan.<\/p>\n \n\t*<\/sup>The exact nature of how TED\u00a0develops\u00a0and progresses is not entirely understood, therefore, precisely how TEPEZZA works is not fully\u00a0established.\u00a0<\/p>\n \n\tAfter TEPEZZA, both Jessie and Will saw improvements that mattered to them.<\/p>\n \n\tIn a clinical study of patients who had TED for 9 months or less, more than 8 out of 10 people who took TEPEZZA saw reduced eye bulging by at least 2 mm, compared to 1 out of 10 who took placebo. Similar clinical studies showed that nearly 7 out of 10 people who took TEPEZZA saw improvements in double vision, compared to 3 out of 10 who took placebo.<\/p>\n \n\tTEPEZZA\u2019s impact on symptoms of inflammation was also studied among people in that same trial population who experienced eye pain, redness, and swelling as part of their TED. Of those patients, 2 out of 3 people who completed treatment with TEPEZZA had little to no eye pain including pain behind the eye and when moving the eye, redness of the eye and eyelid, or swelling of the eye and eyelid.\u2020<\/sup><\/p>\n \n\t\u2020<\/sup>In combined results from two studies, TED patients\u2019 levels of inflammation were recorded using their Clinical Activity Score (CAS), which is a tool that doctors use to assess their patients\u2019 TED symptoms. It evaluates for the presence of 7 symptoms in the eyes and surrounding area: pain that happens for no apparent reason; pain due to looking at something for too long; eyelid swelling; eyelid redness; redness of the eye itself; swelling of the eye, and inflammation in the inner corner of the eye. The higher the CAS number (from 0 to 7), the more serious the impact of TED is seen to be. \n\tIMPORTANT SAFETY INFORMATION (cont\u2019d):<\/strong><\/p>\n \n\tTell your doctor or nurse right away if you have any of these symptoms during or after your treatment with TEPEZZA:<\/strong>\u00a0high blood pressure, difficulty breathing, fast heartbeat, headache, redness of the face\/feeling hot, or muscle pain.<\/p>\n \n\tTEPEZZA may worsen inflammatory bowel disease (IBD), such as Crohn\u2019s disease or ulcerative colitis, even if you don\u2019t have a diagnosis of IBD before starting TEPEZZA treatment.<\/p>\n \n\tTell your doctor right away if you have worsening IBD symptoms, which may include diarrhea with stomach pain or cramps, blood in your stools, sudden urgency to have a bowel movement, or feeling like you need to have a bowel movement even when there\u2019s little or no stool to pass.<\/p>\n \n\tSee additional IMPORTANT SAFETY INFORMATION\u00a0below.<\/strong><\/p>\n \n\tJessie and Will have gotten back to doing the things that are most important to them. \u201cWe\u2019re back to business,\u201d Jessie shared. \u201cI don\u2019t have to tell [my kids] \u2018no\u2019 when they ask to go to the park. It\u2019s nice to be able to do what I was doing and do what I enjoy.\u201d<\/p>\n \n\t\u201cIt\u2019s definitely helped with confidence doing my job,\u201d Will said, noting that improvements in his eye symptoms, including swelling, made it easier to manage his day-to-day responsibilities. \u201cI feel more confident in driving\u2026especially when driving my kids around. There\u2019s a level of comfort knowing we figured it out because it was a confusing process and we feel like things are manageable again.\u201d<\/p>\n \n\tOne of the possible side effects of using TEPEZZA is hearing impairment, which in some cases may be severe and permanent. But \u201chearing impairment\u201d doesn\u2019t always mean hearing loss\u2014hearing may sound muffled, unclear, distorted, or different in certain sound ranges. In clinical studies with people who had TED for 9 months or less, hearing impairment occurred in 10% of patients, with 88% of cases resolved during the study or follow-up period. That was Jessie\u2019s experience as well.<\/p>\n \n\tFor Jessie, \u201cit was basically like someone had blown a bubble over my head,\u201d she said, noting that it wasn\u2019t that she experienced total hearing loss, but that sounds were \u201cjust a little dim.\u201d Fortunately, Jessie experienced no lasting hearing damage.<\/p>\n \n\tBecause TED is a complex condition that can worsen over time, Jessie and Will\u2019s experiences show how important it can be to connect with doctors who understand the disease and can help people recognize and manage symptoms.<\/p>\n \n\t\u201cOne of the challenges with Thyroid Eye Disease is that it doesn\u2019t look the same for everyone. Symptoms can be subtle and easy to dismiss, yet even moderate TED can affect how people see, feel, and function each day,\u201d\u00a0says Jeff Todd, president and CEO of Prevent Blindness<\/a>, a national patient advocacy organization dedicated to vision and e\u200bye health. \u201cIt\u2019s important to\u00a0encourage anyone noticing changes in their eyes or vision to seek care early, because timely diagnosis and connection to a specialist may make a meaningful difference in your e\u200bye health.\u201d<\/p>\n \n\t\u201cAnswers are out there,\u201d Will noted. \u201cYou just have to speak up and connect with the right doctor to find them.\u201d<\/p>\n \n\tIMPORTANT SAFETY INFORMATION (cont\u2019d)<\/strong><\/p>\n \n\tTEPEZZA may cause an increase in your blood sugar. Before starting treatment with TEPEZZA, tell your doctor if you are currently being treated for diabetes, know your blood sugar is high, or have been diagnosed with diabetes. It is important for you to take your treatments and follow an appropriate diet for glucose control as prescribed by your doctor.<\/p>\n \n\tTEPEZZA may cause severe hearing problems including hearing loss, which in some cases may be permanent. Tell your doctor if you have any signs or symptoms of hearing problems or changes in hearing.<\/p>\n \n\tBefore receiving TEPEZZA, tell your doctor if you:<\/strong><\/p>\n \n\tWhat are the possible side effects of TEPEZZA?<\/strong><\/p>\n \n\tThe most common side effects of TEPEZZA include muscle cramps or spasms, nausea, hair loss, diarrhea, feeling tired, high blood sugar, hearing problems, taste changes, headache, dry skin, ear discomfort, weight loss, nail problems, and changes in menstruation.<\/p>\n \n\tThis is not a complete list of all possible side effects. Tell your doctor or treatment team about any side effect you may have.<\/p>\n \n\tYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit\u00a0<\/strong>www.fda.gov\/safety\/medwatch<\/strong><\/a>,\u00a0or call\u00a0<\/strong>1-800-FDA-1088.<\/strong><\/p>\n \n\tPlease see\u00a0<\/strong>Full Prescribing Information<\/strong><\/a>\u00a0or visit\u00a0<\/strong>TEPEZZA.com<\/strong><\/a>\u00a0for more information.<\/strong><\/p>\n \n\tUSA-632-81689<\/p>\n<\/p><\/div>\n![\"Girl](\"https:\/\/www.sheknows.com\/wp-content\/themes\/vip\/pmc-sheknows-2020\/assets\/public\/lazyload-fallback.gif\")
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\n<\/section>\n\n\t\tJessie\u2019s Story\t<\/h2>\n
\n\t\tWill\u2019s Story\t<\/h2>\n
\n\t\tTED Can Show Up Differently For Everyone\t<\/h2>\n
\n\t\tFinding Treatment\t<\/h2>\n
In patients with a CAS of at least 4 at the start of treatment, by the end of treatment 62% (52 of 84) of those treated with TEPEZZA had a CAS of 0 or 1 (seen as inactive disease state) compared to 22% (18 of 87) of those who were treated with placebo.
Each of the 7 symptoms is counted equally toward a single overall score, even though that may not reflect their impact to the individual patient. For example, if a patient has eye redness and eye pain, but is only really bothered by the eye pain, each symptom still adds to the overall score by 1.<\/p>\n\n\t\tEven Moderate TED Deserves Attention\t<\/h2>\n
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