4:11
- wellness
- March 29, 2023
Woman says anxiety diagnosis turned out to be MS
Angelina Cubero said it took her a decade to get diagnosed with MS.
4:11
People of Hispanic and Latino descent often have more severe symptoms of MS, with a faster severity of disease, according to the National Multiple Sclerosis Society. In addition, optic neuritis, or swelling of the eye's optic nerve, which can impact vision, is twice more common in Hispanic people with MS.
Exactly why Hispanic patients are hit younger and more severely by MS remains to be seen because research has been so limited, according to Dr. Lilyana Amezcua, who is considered one of the pioneers in researching the impact of MS on the Hispanic and Latino communities.
\"Is that all an issue of access to care and what we call social determinants of health, or are there other environmental factors and genetic predispositions that do not allow for better recovery of the disease? Those are all questions that are unanswered at this time,\" Amezcua said.
Amezcua, a neurologist and Multiple Sclerosis Fellowship Program Director at the University of Southern California's Keck School of Medicine, said she began studying the connection a decade ago as a practicing neurologist in Los Angeles. At the time, she said less than 1% of MS scientific literature focused on Hispanics or African-Americans.
\"One of the things that I was observing was that with Hispanic patients, there was a delay of diagnosis,\" she said. \"When I would compare them to what I would expect for white people, it was about one to three years delay of getting that diagnosis, so from there we started with our first initial studies to better understand this population.\"
As she began her research -- founding the Alliance for Research in Hispanic MS, a collaboration between multiple universities -- Amezcua said she and her colleagues discovered that Hispanics had been vastly underrepresented in clinical trials. When it comes to clinical trials on medications to treat MS, for example, just 7% of participants are Hispanic, according to Amezcua.
\"We know probably that the drugs do work, but we don't know to the extent, particularly if the disease in [an Hispanic patient] is starting a bit more worse,\" she said. \"What is the possibility that we're going to sort of calm [MS] down more effectively with one drug?\"
Amezcua said the group is now leading a global study that is researching one specific drug targeted for Hispanic and African-American populations, which were both underrepresented in other clinical trials.
The group's research over the past decade has also shown that many of the genetic risk factors present in white people diagnosed with MS are also present in the Hispanic population, according to Amezcua.
\"We're hoping to dig deeper to see if there's additional risk factors that are both genetic and environmental that could help us understand ... MS, and help not just Hispanics but everyone else,\" she said, adding that while there are barriers, more and more Hispanic people want to participate in MS research.
\"We find that there's a high interest of wanting to participate because they're interested in understanding what does MS look like in them, What are the best treatments out there and what services are out there?\"
Both Fiol and Amezcua noted that in addition to scientific research, a large part of the work being undertaken by researchers and patient organizations like the National Multiple Sclerosis Society is to educate both medical professionals and the general public about all the populations MS may impact.
In the Hispanic community, that means working to increase access to MS specialty centers and educating people about MS as a \"silent disease.\" The education includes sharing information about the signs and symptoms of MS both so that people can get medical care earlier, and so families and caregivers understand more about the disease.
\"In MS you have those symptoms that are visible, like walking with a cane, but you also have the silent symptoms and the silent symptoms can culturally be an issue,\" Amezcua said, noting that fatigue, for example, may be perceived as laziness to people unfamiliar with MS. \"MS is not as common as, let's say diabetes and hypertension is in this population, so many of [a patient's] family members may not have heard about MS.\"
Fiol said a large part of her work at the National Multiple Sclerosis Society is focused on recruiting MS specialists like Amezcua, who are Hispanic.
\"We know that people feel more comfortable seeking care from doctors that they feel they can trust and can relate to, and sometimes that has to do with just finding someone that looks like them,\" Fiol said. \"And only 7% of the neurology workforce in the U.S. is Hispanic, so we have a lot of ground to cover and a lot of work to do.\"
Nearly two years after she was diagnosed with MS, Cubero said she began sharing her journey publicly on social media in hopes of raising awareness of the disease and how it can impact Hispanic people as well as young women.
\"Having a diagnosis leads to treatments, which leads to a better experience,\" Cubero said of the importance of people knowing the signs and symptoms of MS. \"I'm just grateful to have a diagnosis because it led me to an MS center, which has a lot of resources for me to improve.\"
Cubero also began to use her voice literally to help raise awareness. She partnered with Genentech, a pharmaceutical company that makes an MS medication, on its #MSVisibility: Breaking Barriers campaign and wrote a song about her journey in order to help educate people and make others with MS feel less alone.
\"I wish I had that when I was searching for answers,\" said Cubero, a singer who performs under the stage name Lina Light. \"It's bittersweet for me, but I'm really happy to help others because I feel like I'm going through this for a bigger purpose. It wasn't just my story, it was to help others to get through their diagnosis too and to support each other.\"
Cubero said she has met other \"MS warriors\" through the National Multiple Sclerosis Society, which last year hosted its first-ever Hispanic LatinX Experience Summit that brought people together to connect virtually with each other.
The National Multiple Sclerosis Society is now also establishing an Hispanic-Latinx Collaborative, an initiative designed to increase outreach and engagement with those communities, according to Fiol.
Throughout her years-long health journey, Cubero said she has learned to advocate for herself. It's one of the lessons she said she hopes other people take away from her story.
![\"PHOTO:](\"http://a.abcnews.com/images/GMA/lina-cubero-02-ht-jt-230322_1679512147481_hpMain_4x3t_384.jpg\")
\"I really want people to be their best advocate, to speak up,\" she said. \"I know that it can be intimidating. I know that it can be hard, but you have to speak up. You deserve the best care.\"
","canonicalUrl":"https://abcnews.com/GMA/Wellness/woman-diagnosed-ms-age-24-puts-spotlight-underrepresentation/story?id=97985834","legacySlug":"/wellness/story/woman-diagnosed-ms-age-24-puts-spotlight-underrepresentation-97985834","noIndexNoFollow":false},"publishTime":"08:12","publishDate":"03-29-2023","updatedTime":"16:12","updatedDate":"03-29-2023","socialImage":{"alt":"Angelina Cubero, of New York, was diagnosed with multiple sclerosis in 2020 at the age of 25.","credit":"Angelina Cubero","ratio":"16x9","url":"https://s.abcnews.com/images/GMA/lina-cubero-ht-jt-230322_1679511634503_hpMain_16x9_1600.jpg","width":992,"height":558},"datePublished":"3/29/2023 08:12:00 GMT","video":{"live":false,"id":97985834,"headline":"Woman says anxiety diagnosis turned out to be MS","mediaAssetTitle":"GMA_Woman raises profile of Hispanics with MS_230320 ","description":"Angelina Cubero said it took her a decade to get diagnosed with MS.","duration":"4:11","posterImg":{"url":"https://s.abcnews.com/images/GMA/default-img-undefined.png","width":608,"height":342},"video":{"feed":"https://service-pkgabcnews.akamaized.net/opp/hls/abcnews/2021/08/210811_gma_pilgrim_ashton_0731_,500,800,1200,1800,2500,3200,4500,.mp4.csmil/playlist.m3u8"},"playlist":["90989898","92497917","54306189"]},"relatedItems":[{"contentType":"story","date":"October 4, 2022","headline":"‘Buffy the Vampire Slayer’ alum Emma Caulfield Ford opens up about MS diagnosis","section":"culture","slug":"/culture/story/buffy-vampire-slayer-alum-emma-caulfield-ford-opens-90989898","id":90989898,"image":{"alt":"‘Buffy the Vampire Slayer’ alum Emma Caulfield Ford opens up about MS diagnosis","url":"https://s.abcnews.com/images/GMA/emma-caulfield-gty-jt-221004_1664911923134_hpMain_4x3t_240.jpg","credit":"Emma McIntyre/WireImage via Getty Images, FILE","ratio":"1x1"}},{"contentType":"story","date":"November 1, 2022","headline":"Christina Applegate on filming 'Dead to Me' amid battle with MS","section":"culture","slug":"/culture/story/actress-christina-applegate-candid-filming-final-season-dead-92497917","id":92497917,"image":{"alt":"Christina Applegate on filming 'Dead to Me' amid battle with MS","url":"https://s.abcnews.com/images/GMA/christina-applegate-file-gty-jef-221101_1667335067262_hpMain_4x3t_240.jpg","credit":"Gregg Deguire/Getty Images, FILE","ratio":"1x1"}},{"contentType":"story","date":"April 7, 2018","headline":"'Sopranos' star says she was forced to stop breastfeeding due to multiple sclerosis","section":"culture","slug":"/culture/story/jamie-lynn-sigler-seeks-advice-forced-stop-breastfeeding-54306189","id":54306189,"image":{"alt":"'Sopranos' star says she was forced to stop breastfeeding due to multiple sclerosis","url":"https://s.abcnews.com/images/Entertainment/jamie-lynn-sigler-1-gty-jt-180407_hpMain_4x3t_240.jpg","credit":"Rachel Murray/Getty Images","ratio":"1x1"}}],"relatedContentSection":"news","schemaContent":{"name":"Woman says anxiety diagnosis turned out to be MS","description":"Angelina Cubero said it took her a decade to get diagnosed with MS.","duration":"4:11","uploadDate":"03-29-2023","publication":"03-29-2023","images":"https://s.abcnews.com/images/GMA/default-img-undefined.png","url":"https://service-pkgabcnews.akamaized.net/opp/hls/abcnews/2021/08/210811_gma_pilgrim_ashton_0731_,500,800,1200,1800,2500,3200,4500,.mp4.csmil/playlist.m3u8","contentUrl":"https://service-pkgabcnews.akamaized.net/opp/hls/abcnews/2021/08/210811_gma_pilgrim_ashton_0731_,500,800,1200,1800,2500,3200,4500,.mp4.csmil/playlist.m3u8","link":"https://www.goodmorningamerica.com/wellness/story/woman-diagnosed-ms-age-24-puts-spotlight-underrepresentation-97985834"}},"playlist":[{"id":"132675442","contentType":"story","section":"news"},{"id":"132665875","contentType":"story","section":"news"},{"id":"132628890","contentType":"story","section":"news"},{"id":"132569874","contentType":"story","section":"news"},{"id":"132567885","contentType":"story","section":"news"},{"id":"132510121","contentType":"story","section":"news"},{"id":"132473181","contentType":"story","section":"news"},{"id":"132497933","contentType":"story","section":"news"},{"id":"132281378","contentType":"story","section":"news"},{"id":"132283010","contentType":"story","section":"news"},{"id":"132273278","contentType":"story","section":"news"},{"id":"132231169","contentType":"story","section":"news"},{"id":"132206748","contentType":"story","section":"news"},{"id":"132200241","contentType":"story","section":"news"},{"id":"132054443","contentType":"story","section":"news"},{"id":"132054798","contentType":"story","section":"news"},{"id":"132033010","contentType":"story","section":"news"},{"id":"131912713","contentType":"story","section":"news"},{"id":"131830583","contentType":"story","section":"news"},{"id":"131834976","contentType":"story","section":"news"}],"kvps":{"pgtyp":"article","lang":"en","sp":"goodmorningamerica","programmatic":"true","bundleId":"com.abcnews"}},"analytics":{"accountID":"wdgnewwdgnewgmaweb","ns":"gma","pageName":"gma:wellness:video","pageType":"video","globalSpecVersion":"v1.08","siteDifferentiator":"gma:site","tagID":"g_page01","userABCookie":"0","section":"wellness","title":"Woman says anxiety diagnosis turned out to be MS","pubTime":"04:12","pubDate":"03-29-2023","modTime":"12:12","modDate":"03-29-2023","taxonomyTags":"none","id":97985834,"editorialOtherSubjects":"","wordCount":"none","columns":"none","authors":"","authorsUnit":"none","authorsBureau":"none","subBrand":"Good Morning America","provider":"Good Morning America","videoName":"Woman says anxiety diagnosis turned out to be MS","mediaAssetTitle":"GMA_Woman raises profile of Hispanics with MS_230320 ","videoId":97985834,"mediaOnPage":"video","legacySlug":"/wellness/story/woman-diagnosed-ms-age-24-puts-spotlight-underrepresentation-97985834"},"taboola":{}},"request":{"headers":{},"httpVersion":"1.1","method":"GET","url":"/video/97985834","vary":{"host":"www.goodmorningamerica.com","cached":true,"path":"/video/97985834","forwarded-proto":"https","device":"desktop","userab":"0"}},"viewport":{"width":1260,"height":0},"user":{}};