Vitamin D Deficiency

The XLH Network and Kyowa Kirin publish findings from community survey, accompanying white paper New evidence shows wide-ranging impact of XLH, including finances, daily activities, and mental health Survey insights will be shared at the NORD Breakthrough Summit in Washington, D.C., October 20-22 PRINCETON, N.J., Oct. 15, 2024 /PRNewswire/ -- Kyowa Kirin, Inc., a wholly owned subsidiary of Kyowa Kirin Co. Ltd., along with The XLH Network, a non-profit patient advocacy organization, today announced the publication of Insights for Change: Findings from the XLH Community Impact Survey, an inside look at the experiences of people living with X-linked hypophosphatemia (XLH), a rare, progressive, genetic disease that impacts the bones and muscles in both children and adults.1 Continue Reading XLH joint logo View PDF The white paper reveals the broader impact of XLH on U.S. patients and their families, including personal finances and out of pocket expenses; physical, mental, and social health; and the challenges faced when accessing expert care. The full survey data report and white paper are the result of a collaboration between Kyowa Kirin and The XLH Network and are now available along with other resources at XLHimpact.com. "For generations, families living with XLH have struggled to explain the disease to many of the professionals involved in their care. Without the data to back them up, patients have often reported feeling dismissed, or that their concerns were not validated," said Susan Faitos, Executive Director of The XLH Network. "Research projects like this, which focus on the actual lived experience of someone with XLH, will lead to a greater understanding of XLH and facilitate meaningful discussions between XLHers and all those involved in their care. The XLH Network is proud to be a part of this project." More than 85 adults with XLH and caregivers of children with XLH responded to the online survey, and 56 of these respondents completed additional follow-up phone interviews. The following key findings illustrate the ongoing challenges of living with XLH. Access to Care: XLHers face unique challenges accessing care. Survey respondents rated their XLH doctors as fairly knowledgeable; however, they spent considerable time and money to access their doctors. Survey respondents reported traveling on average 180 miles roundtrip, taking over three hours just to get to and from their XLH doctor's office. These travel requirements proved to be particularly costly, amounting to on average $1,000 and as much as $15,000 in annual travel costs for survey respondents. Financial Burden: The broad health implications of living with XLH are reflected in the wide array of expenses reported for direct XLH care and other expenses such as home modifications, dental procedures, and travel to doctor offices. Survey respondents indicated that they spent an average of 6% – and in one case as much as 40% – of their annual household income on out of pocket (OOP) expenses related to managing or living with XLH in the last year. In addition, over the past year, 61% of respondents paid OOP for dental care, with annual costs averaging $2,775. Impact on Daily Activities: The survey and white paper also document the considerable toll XLH has on an individuals' day-to-day and social life. When asked to identify the most burdensome impacts on their daily lives, XLHers commonly cited absenteeism, reduced productivity at work or school, and challenges with personal relationships. Some adult survey respondents noted that XLH restricts daily activities such as getting dressed, housework, driving, shopping, and cooking. Mental Health Impact: XLH can strain patients' and families' mental and emotional health resources. A majority of respondents – 83% of adults and 90% of children – reported at least one mental health issue related to their XLH. While most expressed concerns about their overall mental health, very few said they were seeing a mental health professional to address these concerns (13% of adults, 3% of children). Transition of Care: Because of the lifelong, progressive nature of XLH, most XLHers are diagnosed during childhood but continue to experience symptoms into adulthood.1 Nevertheless, an overwhelming majority (94%) of adult XLHers who completed the survey reported they did not formally transition their care from a pediatrician to an adult healthcare professional (HCP). When asked for a reason, 14 of the 49 adults who were diagnosed before age 18, stated they were advised the disease "would go away over time." "Kyowa Kirin is deeply committed to listening to and working with the XLH community to advance the understanding of XLH and the challenges this disease places on patients and their families," said Lauren Walrath, Vice President of Public Affairs at Kyowa Kirin North America. "As this survey makes clear, the needs of every XLHer are unique and while progress has been made, more work is needed to make care accessible and to ease the burden on families. We look forward to working with The XLH Network, healthcare providers, and other stakeholders on solutions that provide meaningful change at the community level." About the XLH Community Impact Survey The XLH Community Impact Survey is a collaboration between Kyowa Kirin and The XLH Network. The purpose of the survey was to quantify and deepen understanding of the lived experiences of adults, caregivers, and children with XLH in the United States. The survey evaluated the impact of XLH on personal finances and physical, mental, and social health, as well as access to expert quality care. Between November 2023 and February 2024, a total of 87 adults living with XLH and caregivers of children with XLH completed an online survey, with follow-up phone interviews conducted with 56 of the respondents. Survey responses reflect respondent variation across key demographics such as age, geography, and insurance status, and may not reflect the experiences of all individuals with XLH. Adult males, young adults aged 18-44, and individuals from rural settings were under-represented among respondents. Engage Health designed, fielded, and conducted analysis of the survey with analytic and editorial support from SmithSolve and input from The XLH Network and Kyowa Kirin, Inc. To learn more about XLH and the survey results, and to access additional resources, visit XLHimpact.com. X-linked hypophosphatemia X-linked hypophosphatemia is a rare, lifelong, genetic disease that can impact the bones and muscles in both children and adults.1 In individuals with XLH, the body doesn't hold on to enough phosphorus, which is an essential mineral for bone health.1 This is due to the production of excess fibroblast growth factor 23 (FGF23), causing the body to release too much phosphorus through the urine.1 When phosphorus levels are too low (hypophosphatemia), it can cause the softening and weakening of growing bones in children (rickets) and of mature bones in children and adults (osteomalacia).1 In children, XLH typically appears as bowed legs or knock knees.1 Over time, bone weakening can also lead to bone abnormalities in the legs, delayed growth, and short stature.1 In adults, XLH may cause osteomalacia, fractures and pseudo-fractures, and hypophosphatemia.1 About Kyowa Kirin Kyowa Kirin aims to discover novel medicines with life-changing value. As a Japan-based Global Specialty Pharmaceutical Company, we have invested in drug discovery and biotechnology innovation for more than 70 years and are currently working to engineer the next generation of antibodies and cell and gene therapies with the potential to help patients affected by severe and rare diseases. A shared commitment to our values, to sustainable growth, and to making people smile unites us across Japan, North America, and EMEA/International. You can learn more about Kyowa Kirin North America at: kkna.kyowakirin.com or LinkedIn: Kyowa Kirin Inc. U.S. About The XLH Network The XLH Network supports families and individuals living with X-Linked Hypophosphatemia (XLH). Our mission includes promoting awareness and education, providing opportunities for connection and community, and to foster the search for a cure. Our vision is early, accurate diagnosis; readily available, well-managed treatment; and healthy quality of life for those who are affected with XLH and related disorders. COR-US-CRY-0096 October 2024 1Dahir K, et al. X-linked hypophosphatemia: a new era in management. J Endocr Soc. 2020;4(12):bvaa151. SOURCE Kyowa Kirin WANT YOUR COMPANY'S NEWS FEATURED ON PRNEWSWIRE.COM? 440k+ Newsrooms & Influencers 9k+ Digital Media Outlets 270k+ Journalists Opted In GET STARTED

The International Conference on Controversies in Vitamin D (Rome, 1-4 September 2024) converged on some preliminary expert findings in view of drafting a consensus statement on the extraskeletal role of vitamin D. The Consensus Conference gathered a panel of over thirty among the world's leading vitamin D experts and was chaired by John P. Bilezikian (Columbia University, New York) and Andrea Giustina (Università Vita-Salute and Ospedale San Raffaele, Milan). ROME, Oct. 7, 2024 /PRNewswire/ -- Vitamin D: how does it affect the muscles and the gastrointestinal and immune systems? Is Vitamin D deficiency correlated with diabetes, obesity or infections? These were the underlying questions of the eighth International Conference on Controversies in Vitamin D that was held in Rome last September. The event gathered over thirty specialists from Europe, America and Australia. Extraskeletal Vitamin D – The experts' opinion on this point is unanimous: vitamin D is not just involved in the skeletal system, which is the current focus of most guidelines and consensus statements issued by the scientific community. «Vitamin D functions as a hormone: it is only partially taken in through food and is produced by our body mainly through the cutaneous synthesis of cholecalciferol in response to exposure to solar radiation. And it has a pleiotropic effect, i.e. it can act on multiple fronts», explained Andrea Giustina, Professor of Endocrinology and Metabolic Diseases at Università Vita-Salute San Raffaele and Chief of the Department of Endocrinology at Ospedale San Raffaele, Milan, as well as coordinator of the Consensus Conference jointly with John P. Bilezikian from Columbia University, New York. «The meeting – professor Giustina continued – relied on the outstanding expertise of the world's leading experts and prompted discussion about the extraskeletal effects of vitamin D, i.e. about all the clinically important processes it promotes outside our bones». Themes discussed – The panel shared their clinical experiences and delved into the existing scientific literature; their work was organised into seven sessions, each moderated by two reputable specialists: - Vitamin D and muscles, Salvatore Minisola (IT) and René Rizzoli (CH); - Vitamin D and cardiovascular health, Jens Bollerslev (NO) and Jyrki Virtanen (FI); - Vitamin D and diabetes, Maria Luisa Brandi (IT) and Marise Lazaretti Castro (BR); - Vitamin D and obesity, Annamaria Colao (IT) and Claudio Marcocci (IT); - Vitamin D and gastrointestinal system, Glenville Jones (US) and Giovanni Latella (IT); - Vitamin D and infections, Neil Binkley (US) and Angelo Fassio (IT); - Vitamin D and immunity, Antonio Bianchi (IT) and Daniel Bikle (US). The panelists reviewed the effects of vitamin D on the muscles, with a focus on sarcopenia and osteosarcopenia. They analyzed the cardiovascular contexts where vitamin D can come into play, such as hypertension, heart failure, cardiosurgery and ischemic heart disease.[1] Additionally, they evaluated the impact of vitamin D on the progression from pre-diabetes to diabetes,[2] as well as on glucose control, adiposity and, in general, on the gastrointestinal system. The theme of COVID-19 was widely discussed in the sessions devoted to infections and immunity: from vitamin D deficiency as a risk factor for acute infection to the studies that investigate the correlation between vitamin D deficiency and Long COVID syndrome[3] on the one side, and impaired long-term antibody response to COVID-19 vaccination[4] on the other side. Conclusions of the Consensus Conference and outlook – «The panel reached an important consensus on the role of vitamin D deficiency and of its supplementation in the progression from pre-diabetes to overt diabetes at least in patients affected by hypovitaminosis D», professor Giustina reported. «Also, special emphasis was placed on the role of vitamin D in cardiometabolic health, with special reference to its impact in obese individuals and to the need for them to be supplemented with higher doses of vitamin D than their normal-weight peers in order to achieve the desired hormone levels. Furthermore, regarding the impact of vitamin D deficiency on body composition, the role of sarcopenia as a risk factor for falls (and, consequently, for fractures) was highlighted especially in elderly vitamin D-deficient patients. The role of vitamin D in autoimmune and infectious processes was reviewed with special focus on acute COVID-19, Long COVID and immune response to COVID vaccination», professor Giustina continued. «Finally, the panel pointed out how vitamin D is a constantly evolving field and how its pleiotropic effects deserve further in-depth investigation in crucially important clinical areas including cardiosurgery and gastrointestinal diseases. Last but not least, the experience gained at the Bone Center of Ospedale San Raffaele was singled out to emphasize the potential role of registries as an additional and effective tool, alongside randomised clinical trials, to collect clinical data on the long-term effects of vitamin D supplementation», professor Giustina concluded. [1] [2] [3] [4] WANT YOUR COMPANY'S NEWS FEATURED ON PRNEWSWIRE.COM? 440k+ Newsrooms & Influencers 9k+ Digital Media Outlets 270k+ Journalists Opted In GET STARTED

TUESDAY, Oct. 1, 2024 -- Children with primary nocturnal enuresis may have vitamin D insufficiency and deficiency as well as vitamin B 12 deficiency, according to a study published online June 10 in Annals of Medicine . Hoda Atef Abdelsattar Ibrahim, from Cairo University, and colleagues examined the prevalence of vitamin D and vitamin B 12 deficiencies in enuretic children. The analysis included 288 children seen at an outpatient clinic for nocturnal enuresis. The researchers found that vitamin D insufficiency predominated (48.3 percent), while vitamin D deficiency was present in 31.3 percent. Vitamin B 12 deficiency was seen in 25 percent of children. There was a stronger inverse correlation between vitamin D and the number of enuresis episodes per day than vitamin B 12 . A cutoff of 13.7 ng/mL for vitamin D was identified, below which failure to have dry nights was predicted. Protective factors for the absence of dry nights were higher vitamin D levels and behavioral treatment coexistence. "Vitamin D insufficiency may be the most prevalent vitamin D abnormality in children with primary nocturnal enuresis. Vitamin D insufficiency may be more common in children with severe enuresis than vitamin B 12 deficiency," the authors write. "This study may invite further research to examine the possible use of vitamin D and vitamin B 12 as potential adjuvant therapies for children with primary nocturnal enuresis." Abstract/Full Text Whatever your topic of interest, subscribe to our newsletters to get the best of Drugs.com in your inbox.