Lupus and Allied Diseases Association, Inc.
@ladaorg.bsky.social
Improving access to care and quality of life by wielding the patient and care partner voice as a catalyst to advance advocacy, education, awareness and research efforts.
Patient Advocate & caregiver Elizabeth SantaCruz shares her frustration and persistence while seeking her daughter Miah’s #lupus diagnostic journey at the NASEM Advancing Diagnostic Excellence in Pediatrics workshop. “We were not being seen, we were not being heard!” @caringforlupus.bsky.social
Kudos to CSRO for bringing rheumatology stakeholders to discuss #Access to care and treatment issues with policymakers. LADA is honored to share our #PatientPerspective. Thank you @congressmannion.bsky.social @kirstengillibrand.bsky.social @schumer.senate.gov for meeting with us.
We are thrilled to share that our 26th Annual #Lupus Charity Golf Classic was a tremendous success raising $207, 232 for our education, #awareness, #advocacy and research programs. We also donated a recordbreaking $618,612 to for lupus research. @mmriresearch.bsky.social @lupusresearch.bsky.social
Bravo to the FDA, CARRA and the passionate #patient and #carepartner representatives Miah, Elizabeth, McKenna, Chloe and Nia, and researchers for making the FDA Workshop to advance pediatric #lupus drug development a success! Mike drop! #LADAOrg @caringforlupus.bsky.social @annezab.bsky.social
Dr. Hermine Brunner shared Lessons Learned from Conducting Clinical Trials in Pediatric SLE. Dr. Brunner discussed how trials have been delayed due to restrictive eligibility criteria and recruitment/enrollment difficulty. #LupusChat #LADAorg @ladaorg.bsky.social
Patients and Care Partners, McKenna Bowes, Chloe Raymond, Nis Cooper, Elizabeth SantaCruz, and Miah Andrade for the final patient panel of the day Patient/Family Panel: Risk Tolerance and Enrollment in Clinical Trials moderated by Dr. Stacy Ardoin #LupusChat #LADAorg @ladaorg.bsky.social
Low dose ASA (81mg or 325mg) increase gout attacks by 81% (RR 1.81). Effect nullified by allopurinol use. For more gout content, follow our Gout: More than Flares campaign at buff.ly/ysjKsTy,
We need innovative research that includes cross-sector collaborations and public-private partnerships, identifies causes, biomarkers, better trial methodologies, diagnostic measures and treatments, prevents complications, and eradicates #lupus. #LupusAwarenessMonth @lupuschat.bsky.social
#Lupus is considered a disease of unmet medical need because of the lack of efficient diagnostic tools, effective therapies, and well-designed clinical trials. Only 1 day to go before the end of #LupusAwarenessMonth. Thank you to all who promoted #LupusAwareness 💜🦋! @michiganlupus.bsky.social
The annual per person with #lupus cost to employers, including medical care, work absence, and short-term disability, is higher than for other chronic diseases such as diabetes, chronic obstructive pulmonary disease, and heart disease. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social
People with #lupus are concerned with potential side effects of drug interventions as well as disease worsening such as hair loss, rashes, weight gain, gastrointestinal problems; outcomes that may be socially challenging to young women and men in the prime of their lives. #LupusAwarenessMonth
#Lupus typically begins during critical years for education and career advancement, lupus profoundly disrupts working lives. We need better diagnostic tools and treatments so that we can achieve our life goals! #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @michiganlupus.bsky.social
While some drugs do benefit people with #lupus, significant side effect profiles exist and can cause increases in infections, cancer, bone loss and osteoporosis, sterility, and stroke among many other adverse health consequences. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social
Classification criteria are used to define #lupus research study populations due to lack of specific #biomarkers resulting in combining heterogeneous patients with various disease manifestations and pathophysiologies and pathogenesis into one group. #LupusAwarenessMonth @lupuschat.bsky.social
It is estimated that as many as one in every 250 African American women in America has #Lupus. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social @rheumcat.bsky.social @rheumresearch.bsky.social
#Fatigue is the most prevalent and incapacitating symptom experienced by about 85 to 92% of people with #lupus, resulting in decreased physical and mental function, and 50% of patients rated it as the most disabling symptom. #LupusAwarenessMonth @lupuschat.bsky.social @michiganlupus.bsky.social
#Gout is a systemic disease that can impact the entire body. Managing gout may help reduce the risk of other serious conditions so talk with your provider about your symptoms to get the most appropriate care. Discover more this #GoutAwarenessDay: goutalliance.org/gout-awarene... #goutalliance
Although #lupus is more severe and more prevalent in non-white populations, recruitment of minority patients to participate in clinical trials has proven to be particularly challenging. #lupusawarenessmonth #lupusawareness @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social
Women of color tend to develop #lupus at a younger age, experience more serious complications and have higher mortality rates—up to 3 times the incidence and mortality of Caucasians. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social
Clinical trials aren’t designed to measure outcomes which are most important to those with #lupus such as mitigating fatigue, daily health-related qol, reduction in current drug regimen, steroid-sparing, side effect tolerability, and comorbid conditions. #LupusAwareness @lupuschat.bsky.social
Join us this Thursday, May 21st to call on Congress to support the #SafeStepAct. One-size-fits-all step therapy policies cause unnecessary delays and potential harm. Make your voice heard and call on your lawmakers to co-sponsor the #SafeStepAct. @michiganlupus.bsky.social bit.ly/StepAct
#Lupus disproportionately affects women of color in the United States; it is 2 to 3 times more common among African-Americans, Hispanics and Latinos, Asians, and Native Americans. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @caringforlupus.bsky.social @michiganlupus.bsky.social
There are significant challenges in creating a uniform control group in #lupus clinical trials because of the variety of background and concomitant medications—usually immunosuppressants. #LupusAwarenessMonth #autoimmune @lupuschat.bsky.social @michiganlupus.bsky.social @caringforlupus.bsky.social
Some drugs used to treat #lupus are approved for other indications such as chemotherapies, used to treat cancer, and immunosuppressants, used post organ transplantation. Some are known to be teratogenic (causing birth defects) and often compromise fertility in men and women. @lupuschat.bsky.social
Ninety percent of those affected are women; however, men and children are also diagnosed with #lupus. #LupusAwarenessMonth #LupusAwareness @caringforlupus.bsky.social @lupuschat.bsky.social @mmriresearch.bsky.social @michiganlupus.bsky.social
#Lupus is an unpredictable condition in which symptoms come and go (flares) and complications can arise suddenly. We need #innovative research that can identify a reliable method to predict and prevent flares before they occur. #LupusAwarenessMonth @lupuschat.bsky.social @caringforlupus.bsky.social
The absence of reliable #biomarkers is a challenge for clinicians in providing the most optimal patient care and is impeding the development of new #lupus therapies. #LupusAwarenessMonth @michiganlupus.bsky.social @lupuschat.bsky.social @caringforlupus.bsky.social @mmriresearch.bsky.social
#Lupus affects women 9 times more often than men, with eighty percent of new cases developing between the ages of 15 and 44 during their child-bearing years or prime of life. #LupusAwarenessMonth #LupusAwareness @caringforlupus.bsky.social @lupuschat.bsky.social @michiganlupus.bsky.social
There is no known cause or cure for #Lupus or #LupusNephritis. Research is critical to discover the pathogenesis of lupus, better treatments and improve lives. #LupusAwarenessMonth @lupuschat.bsky.social @caringforlupus.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social
