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Tag: Autoimmune Diseases

  • Paving the way toward a cure? Study reports new insights into role of proteins in HIV latency

    Paving the way toward a cure? Study reports new insights into role of proteins in HIV latency

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    Newswise — Understanding HIV latency at the molecular level is crucial for efforts to eliminate the viral scourge that causes AIDS. Latent infected cell reservoirs—where the human immunodeficiency virus (HIV) hides and persists in the bodies of infected patients in a kind of silent standby mode—are the reason why antiretroviral treatments never wipe out the virus.

    In a nutshell, these latent reservoirs of HIV act as the biggest obstacle to curing the disease. 

    Now, in a rigorous new study led by uOttawa Faculty of Medicine virologist Dr. Marc-André Langlois, researchers are describing an against-the-grain discovery that is a potential game changer in the field. It has the potential to show the way forward for HIV cure research.

    Published today in Nature Communications, the findings demonstrate that a family of host proteins long thought of as purely antiviral are sometimes also helping latent HIV find safe harbor in patients’ bodies.

    Using cutting-edge technology and methodical assays in this project started in 2016, Dr. Langlois and his collaborators describe the impact of host-encoded proteins called APOBEC3 (A3). These proteins possess the ability to potently mutate viral DNA and restrict retroviruses like HIV as well as other types of viruses. But his team’s latest findings suggest that these proteins can also play another role outside of their traditional evolutionary one – and it’s not always in a patient’s favor.

    “We’re showcasing a new mechanism by which HIV can become latent – and it can become latent through the action of our host proteins that are there to protect us. But in fact, these proteins can end up helping the virus maintain its stealthiness in the body,” says Dr. Langlois, a full professor at the uOttawa Faculty of Medicine and Chair in Pandemic Viruses and Preparedness Research.

    “This is an important finding because these proteins were always perceived of as protectors that were on our side. But our work shows there are instances where they appear to have unintended consequences, and one of these unintended consequences is helping HIV become latent. And HIV latency is the biggest hurdle to a cure,” he says.

    This raises major questions: Is the action of these proteins ultimately more beneficial or more counterproductive in the case of HIV, a virus that favors a latency phenotype? Can a drug be developed down the line to prevent the action of A3 proteins so the cellular and anatomical reservoir of latently infected cells is reduced?

    These are the kind of explorations that Dr. Langlois and his team will be examining moving forward.

    “Yes, we can keep HIV under tight control with antiretroviral drugs – and those drugs work wonderfully. But they’re not a cure. We are striving for a cure, and we think part of the countermeasures following an exposure will be to block the activity of A3 proteins to inhibit HIV latency,” says Dr. Langlois, who is also executive director of CoVaRR-Net, a network of interdisciplinary researchersnorth_eastexternal link created to assist the Canadian government’s strategy to address the threat of emerging SARS-CoV-2 variants. 

    “We’ve done the first demonstration that this mechanism—something that wasn’t on the radar and goes against mainstream thought—is really happening. So this is the first layer of evidence, and we’ll be building on it with follow-up studies.”

    For this study, Dr. Langlois and his uOttawa Faculty of Medicine team focused on infection experiments. They provided samples to collaborators at the University of Western Ontario, who provided the “viral deep sequencing” expertise mapping where the virus inserts itself in the human genome after infection. The research was supported by a Canadian Institutes of Health Research (CIHR) grant.

    Now demonstrated in vitro in the lab, and to some extent in patient samples, Dr. Langlois wants to take it to the next level with animal models. And while the overarching impact of the A3 proteins’ influence on HIV integration site profiles is unclear at this stage, his research team is committed to exploring potential answers.

    The stakes of this research are high. Since its emergence as a new immunodeficiency syndrome in the early 1980s, HIV-AIDs has been one of the globe’s most serious health challenges. There’s been remarkable progress battling the virus, yet there are over 38 million people living with HIV worldwide, and tens of millions of people have died of HIV-related illnesses since the epidemic began.

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    University of Ottawa

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  • Neurologist explains autoimmune disease affecting Celine Dion

    Neurologist explains autoimmune disease affecting Celine Dion

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    Newswise — In an emotional video message, superstar singer Celine Dion recently announced on her Instagram that she has Stiff-Person Syndrome—a rare neurological disorder.

    In the five-minute post, Dion shared how Stiff-Person Syndrome was causing spasms that affect her ability to walk and sing.

    “I’ve been dealing with problems with my health for a long time, and it’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through,” Dion said in her video. “It hurts me to tell you that I won’t be ready to restart my tour in Europe in February.”

    Dion, 64, is a Canadian singer perhaps most recognized for her recording of “My Heart Will Go On,” the theme of the Academy Award-winning motion picture “Titanic.” She also has sold more than 250 million records worldwide and has received five Grammy Awards, including Album of the Year in 1993.

    Dr. Kottil Rammohan, a professor of clinical neurology and the past director of the Multiple Sclerosis Center of Excellence at the University of Miami Miller School of Medicine, explained Stiff-Person Syndrome and its treatment.

    What is Stiff-Person Syndrome?

    Stiff-Person Syndrome is an extremely rare neurological disorder. And no one really knows the exact prevalence, but it is thought to be like one to two per million in population. But with that said, there is probably more of it because the milder forms of the disease probably never get diagnosed.

    The manifestation is muscle cramps. And of course, a very mild form of it. Patients may experience this and find it an annoyance, but it really does not interfere with any activities of daily living and may not even make it onto the radar screen as a neurological disorder. When the problem is significant enough, it takes patients to their doctors. And unless they are in the midst of an attack, even then, many people may pass it off as a muscle contraction or cramp.

    The spasms can be so severe that it can tear muscles, break bones, and destroy joints.

    How is Stiff-Person Syndrome diagnosed?

    Once these cramps start to get worse, to the point that they start to interfere with life, and take patients to the emergency room, the doctor who sees them will need to run specific blood tests.

    There have been new tests that have identified specific antibodies in people. The presence of these antibodies can present without Stiff-Person Syndrome and the antibodies can be a marker—so it goes both ways. The antibodies are called anti-glutamic acid decarboxylase (GAD) and anti-amphiphysin antibodies. GAD is an important enzyme that assists in the production of a glutamic acid to gamma amino butyric acid, the main inhibitory neurotransmitter of the central nervous system.

    More likely than not, that antibody is the reason the individual has this disorder. The important thing is that they check for these antibodies; and if both or one is present, they don’t stop there. Sometimes the presence of these antibodies can be a marker for an underlying cancer. It is important to look for and make sure that such a cancer is not present. Usually the cancer affects the lungs—or in women, the breast.

    I recall one instance where the person would go to the emergency room for severe cramps and attacks and they would treat her with medications that relax the muscle. She would go through these treatments, and they would send her home and there would be no diagnosis. Or they gave her a label that didn’t really mean much. One day, her friend did a Google search. And she learned about Stiff-Person Syndrome. She wrote it down and told her doctor about it, and he checked her blood for the antibodies. The GAD antibody upper limit of normal is one to four—that’s considered normal. This patient’s GAD antibody was one to 68,000. She had some of the worst Stiff-Person Syndrome we had seen.

    Who is most at-risk of contracting or being diagnosed with this disorder?

    Usually, autoimmune disorders are more common in women and in young people rather than old. All the people who I have taken care of at UM—really a handful of them—all of them have been women.

    Is there a treatment for it? What are some ways to manage the symptoms?

    You can manage the symptoms and also treat the underlying problem of the offending antibody. First, of course, is giving something to relax the muscles. Something like Valium, which is excellent for this condition, or Baclofen. Another way to manage the symptoms would be to install a pump in the spine that sends medication through spinal fluid that helps with the spasms in the legs.

    After treating for the muscle spasms, it is important to try to remove the offending antibody. The treatment involves plasma exchange or giving medications to modulate the immune system, including drugs like intravenous immunoglobulin or anti B cell therapies.

    Because it is so rare, how important is it for someone like Celine Dion to raise awareness about this disease?

    Without a doubt, it is important for not only her, but even physicians, to bring awareness to the disease.

    Emergency rooms should be aware, because a person may come in with severe muscle spasms and we don’t want to just treat the spasms and send them home. Some people with these types of symptoms can be mistaken as addicts. We have to realize that this person is not a junkie, they want relief for the problem that they’re going through.

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    University of Miami

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  • Children with type 1 diabetes miss more school, study suggests

    Children with type 1 diabetes miss more school, study suggests

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    Newswise — Children living with type 1 diabetes miss an average of nine more sessions of school a year compared to children without the condition, a new study led by Cardiff University has found.

    Published today in the Journal for Diabetes Care, the research found that children with type 1 diabetes who have the healthiest blood glucose levels miss seven more sessions per year, while those who experience challenges in managing their diabetes are absent for 15 more sessions a year. Absence is measured in sessions, which is half a day.

    The team found that while many children with diabetes still perform well in their education both at age 16 and university participation, those facing struggles to manage their blood glucose levels achieved results that are five grades lower in GCSEs than children without the condition – for example 3Bs and 5Cs vs 8 Bs.

    They are also less than half as likely to attend university as children without type 1 diabetes.

    The team’s research – a quantitative study which used data from schoolchildren (aged six to 18) in Wales between 2009 and 2016 – also took into account factors such as a child’s household socioeconomic status, neighbourhood deprivation, gender, and age.

    They found that these personal and family characteristics are likely to be associated with effective self-management of diabetes and in turn, have an effect on educational attainment.

    “Our research suggests children living with type 1 diabetes face many additional challenges in school, including higher absences,” said lead author Dr Robert French, a senior research fellow at Cardiff University’s School of Medicine.

    “Children living with diabetes and managing the condition achieve the same grades at age 16 as their peers without diabetes – and are equally as likely to progress to higher education. This is quite remarkable, given that they miss more school sessions than those without the condition.

    “Where we do see large differences in educational outcomes is for those children facing struggles in managing their diabetes.

    “However, our data suggests that this is most likely the result of social rather than biological factors and something that schools have the capacity to improve.”

    Type 1 diabetes is one of the most common chronic childhood conditions in the UK, affecting one in 250 children,– although it can be diagnosed later in life. An autoimmune condition, it is not the result of lifestyle factors and requires self-injections of insulin regularly, or the use of an insulin pump to control blood sugar levels.

    Shelby Sangha was 17 when she was diagnosed with Type 1 diabetes. Now aged 23, she works for West Midlands Ambulance Service as an Emergency Medical Dispatcher.

    “I absolutely hated school at the best of times and then my whole world quite literally came crashing down when I discovered that I was diabetic. 

    “I didn’t want to believe I had diabetes or need treatment because my friends didn’t – so why should I? I kind of pushed it to the back of my mind and tried to forget about it.  

    “School and exams were a whirlwind, a very big emotional roller coaster. No-one really had a clue what diabetes was or what it entailed, me included. I don’t even think I had any support from my school, if I remember correctly. 

    “I think much more needs to be done to raise awareness of the impact of diabetes on children and young people. As well as support for them, talks in schools or patient referral groups would be a huge benefit.”

    Rebecca Barlow-Noone was diagnosed with Type 1 diabetes when she was 18. Now aged 26, she has recently completed a masters degree and has been part of the research project’s advisory group.

    “Unstable blood sugar levels have a significant impact on your well-being, concentration levels and day-to-day life, so I am not surprised by the findings in this study” she says.

    “I was lucky to have support at home when I was diagnosed, but even so, Type 1 diabetes can be an isolating condition and there are real barriers that children and young people face. 

    “Worryingly, In the current cost of living crisis, even support is not enough – particularly if children with diabetes are missing school meals. It makes this complex condition even more difficult to manage.

    “It’s really important that we understand how these extra factors – the social determinants such as where we grow up and the education we receive – impact health.”

    Dr French added: “Living with diabetes can affect every aspect of a child’s life, from family, friendships and their self-esteem, and it is complex to manage with many factors at play.”

    “It also places a huge burden on the NHS in terms of costly interventions. Type 1 diabetes is estimated to account for £1bn in direct costs for the NHS, including diabetes-related heart disease, kidney failure and foot amputations) and £0.9bn in indirect costs, for example, absence from work due to ill health and impact on mental health.

    “This study is important for how we address the health and education challenges for young people with diabetes in the future. Schools and healthcare teams need to work together to provide more support to children and their families. This will ensure that children living with diabetes can thrive and reach their full academic potential.”

    Dr Faye Riley, Research Communications Manager at Diabetes UK, added: “Every child with diabetes deserves the same education, experiences and opportunities as their peers. This study encouragingly indicates that although children with type 1 diabetes tend to miss more school than those without the condition, their condition does not negatively impact their educational attainment and likelihood of progressing to higher education at the age of 16.

    “While the research found that those with higher blood sugar levels achieved lower grades than those with levels in a target range, it does not show that high blood sugar levels are the direct cause of this. Instead, it is likely that this link is explained by other factors, such as family support and socioeconomic factors that are associated with both higher blood sugars and poorer educational outcomes. Health inequalities exist across diabetes care, and these findings are an important reminder that schools and healthcare professionals must work together to ensure that all children with type 1 diabetes and their families have the support they need to manage the condition, and to thrive.”

    The study was funded by the Medical Research Council (MRC) and Administrative Data Research UK (ADR UK). Research partners included Diabetes UK, Royal College of Paediatrics and Child Health, NHS Digital, Health Quality Improvement Partnership, University College London and Swansea University.

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    Cardiff University

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  • We Still Don’t Know What Fundamentally Causes Canker Sores

    We Still Don’t Know What Fundamentally Causes Canker Sores

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    A canker sore—a painful white ulcer inside the mouth—might be brought on by stress. Or the wrong toothpaste. Or certain foods: tomatoes, peanuts, cinnamon. Or an iron deficiency. Or an allergy. Or a new prescription. Or an underlying autoimmune disease.

    Even though millions of people suffer from them every year, researchers still don’t know much about what fundamentally causes these sores. This leaves doctors and dentists stuck playing detective with their patients—running down a checklist, trying to figure out which of more than a dozen potential triggers could’ve set off the gnarly little lesions.

    That list is long and spans different specialties in medicine. It includes trauma to the mouth, stress, diet, genetics, hormones, allergies, vitamin deficiencies, autoimmune diseases, and gastrointestinal diseases. Diana V. Messadi, a professor at the UCLA School of Dentistry, told me that canker sores are multifactorial, which makes them hard to study. Cold sores, by comparison, offer a much tidier story: They’re viral infections (herpes simplex) and thus are treatable with antivirals. (Cold sores are pimplelike blisters that usually form around the lips, whereas canker sores are white ulcers that occur inside the mouth.)

    Read: The overblown stigma of genital herpes

    Canker sores can be loosely sorted into two buckets. In Bucket A are the smaller, more common sores, the kind a person might get two or three times a year. These sores are bright, nagging, and painful, and they make eating and talking difficult. They usually aren’t life-threatening. In Bucket B are larger cankers, usually more than a centimeter wide. (Technically, a third bucket exists that includes herpetiform, or clustered, sores—but this type is rare.)

    Big or small, some sores are linked to an underlying disease, like Crohn’s, Behçet’s, HIV/AIDS, or celiac disease. In a way, these cases are better understood: The sores are a secondary effect of something else going on in the body—something a doctor can test for and identify.

    The human mouth is a weird place. Canker sores occur in what’s called the oral mucosa, which is doctor-speak for the skin (it’s not actually skin) inside your mouth. Even though the mucosa is tucked away inside your cheeks, it gets exposed to a lot. Salsa, notes Nasim Fazel, a former professor at UC Davis who started the college’s oral-mucosal clinic, “is a chemical irritant. You don’t rub salsa on your skin.” But people do eat salsa—and chips, nuts, and other foods that are spicy or acidic or sharp, and that can damage the lining of the mouth. Some of these wounds later develop into canker sores.

    Because the mouth is dirty, white blood cells like to hang out there; Andres Pinto, a professor at the Case Western Reserve University’s school of Dental Medicine, told me that this way, they can react quickly to a potential infection. But sometimes, this surveillance system fails, and the body can actually self-injure. This is thought to be part of what causes typical canker sores, Pinto explained: Immune dysregulation is the “common denominator” behind the ulcers. Inflammation can help the body heal, but too much inflation can cause the mucosa to break down, which is what we see when we look at the oval-shaped wounds.

    Beyond that, canker sores are still idiopathic, meaning doctors don’t really know why they happen. The body’s immune system is deeply complicated; as my colleague Ed Yong wrote in 2020, it’s where “intuition goes to die.” “The problem with all these immune-mediated conditions, oftentimes, is we still don’t know why they come,” Alessandro Villa, the chief of oral medicine at the Miami Cancer Institute, told me. “At the end of the day, it’s still a big mystery.”

    Another lingering mystery is why some people get canker sores while others live in ignorant bliss, free of their specific kind of torture. Genetics is starting to help solve that one. “Using sophisticated computers, we can actually detect which genes are associated with what we see in the mouth,” Pinto told me. “What I just said is a big step,” he added. “It took probably 30 years to develop that last sentence.”

    Read: Paxlovid mouth is real—and gross

    More research is needed to better treat patients, especially those with bad or chronic sores. Topical steroids can help, but they don’t address the underlying causes. A spokesperson for the FDA told me there are no available FDA-approved prescription options specifically for canker sores.

    Comparatively speaking, the United States does not have a lot of providers that specialize in this area. Fazel, formerly of UC Davis, is a rare combination of dentist and dermatologist who sometimes sees patients with debilitating cases. “I’m kind of using the same meds as I was using 10 years ago,” she told me. “It’s kind of sad.”

    Oral-medicine specialists are dentists with extra training in such ailments. But only about 400 practice in the United States, Pinto estimated. A representative for the American Academy of Oral Medicine told me the organization currently has 281 active members (although it noted that there may be additional nonmembers practicing). Fazel, for her part, thinks dermatologists are better equipped to treat canker sores, because dentists “can’t prescribe the big guns.” (The “big guns,” in this case, are medicines that modulate the immune system to calm inflammation.) Even if a patient does manage to see the right provider, that’s only the first step. They’ll still need to go through the checklist, trying to determine what their triggers are—while the bigger question of what actually causes the sores remains unknown.

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    Caroline Mimbs Nyce

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  • HSS Research Uncovers How UV Light Triggers Immune Activation and Disease Flares in Lupus

    HSS Research Uncovers How UV Light Triggers Immune Activation and Disease Flares in Lupus

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    Newswise — After sun exposure, people with systemic lupus erythematosus (SLE) frequently develop skin rashes, which often are accompanied by a flare of their overall disease. This connection between ultraviolet (UV) light and disease flares in lupus is well known, but the way in which UV exposure actually triggers the disease has been poorly understood.

    In a new study being presented at ACR Convergence 2022, the annual meeting of the American College of Rheumatology, researchers from Hospital for Special Surgery (HSS) report that they have found an underlying mechanism that explains this association: decreased lymphatic drainage, which contributes to both photosensitivity and an immune response in the lymph nodes. The research also suggests that boosting lymphatic drainage may be an effective treatment for lupus photosensitivity and autoimmunity.

    “When people with lupus have a systemic flare of their disease, it can affect any organ that is part of their disease,” says senior author Theresa T. Lu, MD, PhD, who holds the St. Giles Chair for Research in the HSS Research Institute, is a faculty member in Pediatric Rheumatology and in Rheumatology at HSS and is a professor of microbiology and immunology and of pediatrics at Weill Cornell Medicine. “We wanted to look at why sun exposure at the level of the skin affects internal organs like the kidneys, heart and lungs.”

    “This study sheds some light on how sun exposure and UV light cause people with lupus to have more autoantibodies in their blood,” adds first author William Ambler, MD, a former fellow at HSS in Dr. Lu’s lab who is now Metzger Scholar in Translational Medicine at the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health.

    The skin communicates with the immune system by sending cells and molecular signals via the lymphatic vessels to the lymph nodes, where immune responses begin. The signals that the skin sends to the lymph nodes control the type of immune responses that occur. Lymphatic vessels also serve the function of removing fluid and cells from the skin. If lymphatic vessels do not work properly to bring signals from skin to lymph nodes, there can be delayed resolution of skin inflammation, leading to faulty signals being sent to the lymph nodes.

    Research in the Lu lab suggests that lymphatic flow from the skin to the draining lymph nodes is reduced in people with lupus. The investigators hypothesize that this decreased flow alters lymph node immune responses, making them more pathogenic. They decided to look more closely at this communication and how it impacts immune function. The current research employed both patient samples and mouse models of SLE.

    The investigators studied skin biopsies from lupus patients as well as from healthy volunteers who served as controls. When they looked at the samples from the lupus patients, they found these more dilated lymphatic vessels compared with the healthy controls. This provided evidence that people with lupus have poor lymphatic flow.

    They then studied mouse models of SLE, using a dye injected into the skin to visualize the flow of lymphatic fluid. They found that when lupus mice were exposed to UV radiation, more dye remained in the skin. This provided evidence that the lymphatics were not clearing the fluid as well as they should.

    Importantly, the researchers then looked to see if they could improve certain hallmarks of disease in the mice by using manual lymphatic drainage techniques to manipulate the flow of lymph fluid. This type of therapy is used in people with certain types of cancer, especially breast cancer, to prevent lymphedema (fluid accumulation and swelling) after the surgical removal of lymph nodes. They found that performing lymphatic drainage in the mice reduced the numbers of plasmablasts and germinal center B cells, types of cells that are known to be important players in lupus.

    Drs. Ambler and Lu are optimistic that manual lymphatic drainage may benefit lupus patients but emphasize that clinical trials in patients are needed to confirm it would be safe and effective.

    The investigators note that this research is also important because it advances the broader field of understanding how skin and organs communicate through the lymph nodes and the immune system.

    About HSS

    HSS is the world’s leading academic medical center focused on musculoskeletal health. At its core is Hospital for Special Surgery, nationally ranked No. 1 in orthopedics (for the 13th consecutive year), No. 3 in rheumatology by U.S. News & World Report (2022-2023), and the best pediatric orthopedic hospital in NY, NJ and CT by U.S. News & World Report “Best Children’s Hospitals” list (2022-2023). In a survey of medical professionals in more than 20 countries by Newsweek, HSS is ranked world #1 in orthopedics for a third consecutive year (2023). Founded in 1863, the Hospital has the lowest complication and readmission rates in the nation for orthopedics, and among the lowest infection rates. HSS was the first in New York State to receive Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center five consecutive times. An affiliate of Weill Cornell Medical College, HSS has a main campus in New York City and facilities in New Jersey, Connecticut and in the Long Island and Westchester County regions of New York State, as well as in Florida. In addition to patient care, HSS leads the field in research, innovation and education. The HSS Research Institute comprises 20 laboratories and 300 staff members focused on leading the advancement of musculoskeletal health through prevention of degeneration, tissue repair and tissue regeneration. The HSS Innovation Institute works to realize the potential of new drugs, therapeutics and devices. The HSS Education Institute is a trusted leader in advancing musculoskeletal knowledge and research for physicians, nurses, allied health professionals, academic trainees, and consumers in more than 145 countries. The institution is collaborating with medical centers and other organizations to advance the quality and value of musculoskeletal care and to make world-class HSS care more widely accessible nationally and internationally. www.hss.edu.

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    Hospital for Special Surgery

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  • Participation Doubles After Lupus Support Group at HSS Transitions to Virtual Format During Pandemic

    Participation Doubles After Lupus Support Group at HSS Transitions to Virtual Format During Pandemic

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    Newswise — A study at Hospital for Special Surgery (HSS) highlights the success of a lupus peer support and education group that transitioned to a virtual format during the pandemic. In addition to receiving high marks from group members, participation more than doubled after the meetings went remote.  

    “Studies have demonstrated the benefits of online peer support forums in meeting the mental health, disease self-management and coping needs of people living with a chronic illness,” explained Giselle Rodriguez, LCSW, social work program coordinator for Charla de Lupus (Lupus Chat)® at HSS. “Although in-person meetings were no longer viable during the pandemic, the virtual groups offered an effective platform for patients to continue to meet with their peers, reduce isolation and expand the reach to additional family members at home and across the country.”

    Rodriguez presented the study, “Evaluating the Effectiveness & Impact of an In-Person Peer Support Group That Transitioned to a Virtual Platform During the COVID-19 Pandemic,” at ACR Convergence 2022, the annual meeting of the American College of Rheumatology, in Philadelphia on November 12.

    At the monthly support group, which has been ongoing at HSS since 2001, social workers, rheumatologists and other health care professionals offer information on topics related to lupus, such as medications, nutrition, pain management and research. The bilingual social work team translates all presentations into Spanish to distribute to Spanish-speaking members prior to the Zoom meetings. In addition, all communications in the chat box are translated live during the sessions to encourage Spanish speakers to participate. In some groups, simultaneous translation is provided.

    To assess the effectiveness of the meetings, members received an online survey with multiple-choice and open-ended questions after nine virtual sessions from September 2020 to June 2021. Researchers conducted a comparison analysis with surveys completed by in-person groups held in 2018-2019 to assess reach, satisfaction, knowledge, coping and disease management.

    Reach increased significantly after transitioning to a virtual group, with 373 participants versus 177 in 2018-2019. Responses highlighted the benefits of a virtual group, such as removing transportation barriers, the ability to join the meeting from anywhere and ease of participation by sharing a link. Limitations included inability to connect one on one, no internet access and challenges using Zoom.

    Key findings:

    • 99% of respondents reported satisfaction with the virtual groups
    • 98% agreed that the groups increased their understanding of lupus-related issues
    • 98% agreed the program met their expectations
    • 97% agreed that they would recommend this group
    • 95% agreed they could apply what they learned to manage lupus
    • 93% agreed the groups helped them cope with lupus

    No significant differences were observed when comparing most answers from in-person groups conducted in 2018-2019 to the virtual group. However, in the virtual group, there was an 8% increase in respondents indicating that the sessions helped them cope with lupus.

    Survey comments from participants demonstrated that they appreciated the virtual format:

    “It was an excellent idea to transition from in-person programming to virtual. Charla should keep it virtual or a mixture of programming and virtual to keep it easy to attend all the meetings without missing any.”

    “Charla has made great use of Zoom for each of their programs. Although the experience is not the same as in person, every program was just as informative.”

    “I love the Zoom meeting since it is a way for everyone to stay connected from home healthy and safe.”

    “I would not have been able to attend the meetings due to location.”

    The monthly lupus support groups and special events continue to be hosted online through Zoom. Rodriguez and colleagues are assessing participants’ interest in a hybrid model utilizing both in-person and virtual groups going forward.

     

    Giselle Rodriguez1, Priscilla Calvache1, Lillian Mendez1, Kimberly Cabrera1, Roberta Horton1, Lisa Imundo2 and Jillian Rose-Smith1, 1Hospital for Special Surgery, New York, NY, 2New York Presbyterian Hospital – Columbia Campus, New York, NY

    About HSS

    HSS is the world’s leading academic medical center focused on musculoskeletal health. At its core is Hospital for Special Surgery, nationally ranked No. 1 in orthopedics (for the 13th consecutive year), No. 3 in rheumatology by U.S. News & World Report (2022-2023), and the best pediatric orthopedic hospital in NY, NJ and CT by U.S. News & World Report “Best Children’s Hospitals” list (2022-2023). In a survey of medical professionals in more than 20 countries by Newsweek, HSS is ranked world #1 in orthopedics for a third consecutive year (2023). Founded in 1863, the Hospital has the lowest complication and readmission rates in the nation for orthopedics, and among the lowest infection rates. HSS was the first in New York State to receive Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center five consecutive times. An affiliate of Weill Cornell Medical College, HSS has a main campus in New York City and facilities in New Jersey, Connecticut and in the Long Island and Westchester County regions of New York State, as well as in Florida. In addition to patient care, HSS leads the field in research, innovation and education. The HSS Research Institute comprises 20 laboratories and 300 staff members focused on leading the advancement of musculoskeletal health through prevention of degeneration, tissue repair and tissue regeneration. The HSS Innovation Institute works to realize the potential of new drugs, therapeutics and devices. The HSS Education Institute is a trusted leader in advancing musculoskeletal knowledge and research for physicians, nurses, allied health professionals, academic trainees, and consumers in more than 145 countries. The institution is collaborating with medical centers and other organizations to advance the quality and value of musculoskeletal care and to make world-class HSS care more widely accessible nationally and internationally. www.hss.edu.

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    Hospital for Special Surgery

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  • Social Media Influencer Gigi Robinson to Deliver Keynote at the Autoimmune Community Summit

    Social Media Influencer Gigi Robinson to Deliver Keynote at the Autoimmune Community Summit

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    Newswise — The Autoimmune Association, the world’s leading nonprofit organization dedicated to autoimmune awareness, advocacy, education, and research, is partnering with Gigi Robinson, a Gen Z patient advocate and creator economy thought leader. Gigi will deliver a lunch keynote session at the Autoimmune Association’s annual Autoimmune Community Summit taking place virtually October 21-22, 2022.

    “I am super excited to be talking to such an amazing community of people looking to learn more and find new ways to navigate living life with chronic conditions,” Gigi said.

    When she was just 11 years old, Gigi was diagnosed with Ehlers Danlos Syndrome, a connective tissue disorder, that leaves her very susceptible to injury. She has used her chronic illness as fuel for her passion for advocacy. Along with chronic illness advocacy, Gigi is also extremely passionate about mental health and body image. Having suffered from both in her teenage years, she strives to be a role model for the next generation, speaking directly to them via social media, podcasts, as well as numerous panels at colleges, high schools, and multiple nonprofits organization seminars.

    The Autoimmune Community Summit, presented by the Autoimmune Association, is a virtual, free, two-day event designed for patients and care partners featuring educational and empowering sessions led by autoimmune experts including physicians, nurses, policy experts and of course, patient advocates. Attendees will hear about the most pressing topics that impact the autoimmune community, including clinical trials, health equity, access, complementary medicine, nutrition, coping mechanisms, medical and personal relationships, and more.

    In her keynote, Gigi will discuss living life with a chronic illness, crucial communication skills, and mindset shifts that will inspire attendees to have a newfound perspective on their conditions.

    Autoimmune diseases – comprising approximately 100 unique, chronic conditions – affects as many as 50 million Americans. These diseases include well-known conditions such as type 1 diabetes, multiple sclerosis, lupus, and rheumatoid arthritis, as well as others that are rare and difficult to diagnose.

    “We are thrilled that Gigi is joining us for the Autoimmune Community Summit. She brings a unique perspective that will inspire and empower others living with chronic illness,” said Molly Murray, Autoimmune Association president and CEO. “As a social media influencer popular among the Gen Z population, Gigi will offer fresh insights and help create connections among the diverse autoimmune community.”

     

    The full agenda, speaker information, session descriptions, and registration for the Autoimmune Community Summit can be found at go.autoimmune.org/AiCommunitySummit2022.

     

    About The Autoimmune Association

    The Autoimmune Association leads the fight against autoimmune disease by collaborating to improve healthcare, advance research, and support the community through every step of the journey. For more information about the Autoimmune Association, please visit autoimmune.org and connect on Facebook, Twitter, Instagram, LinkedIn and YouTube.

     

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