Learn More about COVID-19 from OI Experts

 

OI community members were invited to join OI experts, Dr. Robert Sandhaus (pulmonologist at National Jewish Health in Denver, CO) and Dr. Sandesh Nagamani (clinical geneticist at Baylor College of Medicine in Houston, TX), to discuss how COVID-19 is affecting the OI community. During this session, the speakers provided updates on how COVID-19 may impact those with OI, and provided best practices in approaching the changing landscape of social distancing policies across the United States.

 

Below is the recording of this session:

 

Pneumonia Vaccine Update

The Foundation is continually developing new information resources in response to the needs of families, individuals, and professionals working with those affected by OI. Thank you to Dr. Robert Sandhaus (University of Colorado School of Medicine, Denver, CO) for helping us update the fact sheet listed below.

Pneumonia Vaccine Update – Information for Children and Adults who have OI

The OI Foundation has published fact sheets on many topics related to understanding and living with OI. View all OIF Fact sheets at www.oif.org/informationcenter/factsheets/.

 

COVID-19 Q&A: Nutrition

Eating Healthy during the COVID-19 Pandemic
Thursday, April 9, 2020 – 1:00pm EST

Ashley Reese, MMN, RDN, LMNT (Clinical Pediatric Dietitian) and Stefanie Sacks, MS, CNS, CDN (Culinary Nutritionist and Author of What the Fork Are You Eating?) joined OI community members to discuss Nutrition and Eating Healthy during the COVID-19 pandemic. Continue reading “COVID-19 Q&A: Nutrition”

COVID-19 Q&A; Orthopedic Perspectives on OI

COVID-19 Q&A: Orthopedic Perspectives on OI during the COVID-19 Pandemic with OI experts
Thursday, March 26, 2020

On Thursday, March 26, 2020 at 5:30 p.m. ET,  Jill Flanagan, MD (Children’s Healthcare of Atlanta), Jeanne Franzone, MD (Nemours/Alfred I. duPont Hospital for Children), and Maegen Wallace, MD (Children’s Hospital & Medical Center, Omaha) joined OI community members on a video meeting to discuss orthopedic perspectives on OI during the COVID-19 Pandemic.

Click here to view the full transcription of this recording.

To suggest a topic for upcoming COVID-19 Q&A video sessions, please email bonelink@oif.org.


COVID-19 Q&A: Mental Health and Self-Care

COVID Q&A; Mental Health and Self-Care during the COVID-19 Pandemic
Thursday, March 26, 2020

On Thursday, March 26, 2020 at 1:00 p.m. ET, the OI Foundation hosted a video meeting to connect OI community members with Dr. Kara Ayers (Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities) and Dr. Michelle Fynan (Online Instructor at LA Film School, Online Coach and Therapist) to discuss mental health and self-care considerations during the COVID-19 pandemic.

Click here to view the transcription of this recording 

To suggest a topic for upcoming COVID-19 Q&A video sessions, please email bonelink@oif.org.


 

 

Discuss COVID-19 with OI experts

During this challenging time, we at the OI Foundation will make every effort to provide you with the most up to date information on how the COVID-19 pandemic is affecting you and the entire OI community.

On Thursday, March 19, 2020 Dr. Robert Sandhaus (pulmonologist at National Jewish Health in Denver, CO) and Dr. Francis Glorieux (Chair of the OIF’s Medical Advisory Council) hosted a video call to provide information about COVID-19 and how we, as an OI community, can keep safe and well during this time. If you were unable to attend, please watch the video below.

To view the full transcription of this recording, click here.

If you have any questions please email bonelink@oif.org and we will respond to you as soon as possible.

To suggest a topic for upcoming COVID-19 Q&A video sessions, please email bonelink@oif.org.

Coronavirus 2019: Información actualizada al 13 de marzo de 2020:

Información actualizada al 13 de marzo de 2020: El Centro de Control y Prevención de Enfermedades de los Estados Unidos (CDC) ha publicado nuevas recomendaciones para las personas con mayor riesgo de tener complicaciones con el COVID-19. La información completa puede encontrarse en la página web del CDC: https://www.cdc.gov/coronavirus/2019-nCoV/index.html

El brote actual de Coronavirus 2019 (SARS-CoV-2), identificado por primera vez en China, pero ahora extendido internacionalmente, se ha convertido en un problema de salud muy importante para la población de los Estados Unidos. El CDC informa que esperan más casos confirmados en el país durante los próximos días y que se está trabajando agresivamente para controlar la propagación del virus. COVID-19 es el nombre que se le da a la enfermedad causada por el SARS-CoV-2. El virus COVID-19 causa fiebre, tos y dificultad para respirar. Esta enfermedad puede complicarse con una neumonía viral, particularmente en la población susceptible. Muchas personas que tienen COVID-19 exhiben solo síntomas leves, e incluso es posible que algunas personas aun estando infectadas no presenten ningún síntoma. Es importante mencionar, que las personas infectadas pueden haber estado propagando el virus por hasta dos semanas antes de manifestar síntomas.

En la actualidad no existe un tratamiento específico para COVID-19 y no hay grupos específicos con mayor riesgo de infectarse. PERO, hay grupos que tienen más probabilidades de desarrollar formas más severas de presentación, de requerir hospitalización e incluso de tener un mayor riesgo de muerte. Estos grupos de riesgo incluyen personas con enfermedad pulmonar, diabetes y enfermedad cardíaca. La edad es un factor de riesgo importante, ya que las personas mayores de 65 años tienen más probabilidades de desarrollar una enfermedad grave y el riesgo de muerte aumenta con cada década por encima de los 60 años.

Las personas con OI deben seguir estrictamente todas las recomendaciones del CDC y otros expertos y al mismo tiempo estar alerta de la existencia de recomendaciones infundadas y de personas inescrupulosas que suben información falsa en Internet. No hay datos científicos disponibles al momento que evalúen cualquier enfoque particular exclusivo para la comunidad de personas con OI. Los expertos recomiendan seguir las siguientes guías generales:

  • Mantener la “Distancia Social”: Mantener al menos 2 metros de distancia con otras personas cuando se esté en lugares públicos o en contacto con personas ajenas al entorno familiar (convivientes). No estreche la mano ni toque la piel de otros individuos. Evite estar en lugar confinados con grupos de 10 o más personas.
  • Evite los viajes aéreos, cruceros y, en áreas con alta prevalencia de infección, el transporte público.
  • Evite el contacto cercano con personas con enfermedades respiratorias.
  • Si usted está enfermo, limite el contacto con los demás tanto como sea posible.
  • Quédese en casa si está enfermo (auto-aislamiento). Los familiares que viven con usted deben seguir exactamente las mismas restricciones que usted.
  • Cúbrase la nariz y la boca cuando tosa o estornude. Lo mejor es cubrirse la boca y la nariz con un pañuelo descartable, desecharlo inmediatamente y luego lavarse las manos. Evite tocarse los ojos, la nariz y la boca con las manos sin lavar; los gérmenes se propagan de esta manera.
  • Limpie y desinfecte superficies y objetos que puedan estar contaminados con gérmenes. El coronavirus puede propagarse por la tos y el virus puede vivir en superficies sólidas durante muchas horas si no se desinfectan las mismas.
  • Lávese las manos con frecuencia con agua y jabón durante al menos 20 segundos. Si no hay agua y jabón disponibles, use un desinfectante para manos a base de alcohol con al menos un 60% de alcohol, frotando todas las partes de sus manos y dedos hasta que se seque.
  • Intente mantener una reserva de alimentos y agua para dos semanas en su hogar.
  • Si es posible, mantenga una reserva de medicamentos recetados para 90 días en su hogar.
  • Reciba la vacuna antigripal si aún no la ha recibido este año, pero de ser posible désela en su farmacia local, en lugar de en un consultorio o centro médico.

¿Cuáles son las recomendaciones específicas para las personas con OI?

Las personas con OI, especialmente aquellas con las formas más severas, que desarrollen síntomas pulmonares debido a COVID-19, probablemente tengan más complicaciones respiratorias que aquellas sin OI. Por lo tanto, las personas con OI y sus familiares deben seguir cuidadosamente las recomendaciones enumeradas previamente. Intente estar actualizado con las recomendaciones publicadas por las autoridades sanitarias, especialmente las de su comunidad local.

La OI Foundation tiene varias publicaciones que abordan los problemas respiratorios en personas con OI, incluido un folleto informativo Take Charge of Your Breathing (Toma el Control de Tu Respiración) como parte del Adult Health Tool Kit (Kit de Herramientas para el Control de la Salud del Adulto) de la OIF.

La sección de preguntas frecuentes del folleto informativo mencionado anteriormente subraya que las personas con OI se consideran dentro del grupo de “alto riesgo” para infecciones pulmonares según lo definido por el CDC y actualmente se cree que las personas con OI tienen mayor predisposición a desarrollar infecciones bronquiales y neumonía.

En las personas con OI, las enfermedades respiratorias pueden ser muy graves, e incluso potencialmente mortales. Debido a esto, es MUY IMPORTANTE que las personas con OI sigan las recomendaciones del CDC y recuerden que, la mejor fuente de información es su médico de cabecera o su centro médico local quienes podrán brindarle recomendaciones específicas y respuestas a sus preguntas.

La OI Foundation, con la ayuda de su grupo de expertos, continuará manteniendo actualizada a la comunidad de OI a medida que haya más información disponible. Mientras tanto, le recomendamos que visite el sitio web oficial del CDC www.cdc.gov para obtener información actualizada y las últimas recomendaciones.

Para mayor información, por favor referirse a los folletos informativos de la OIF indicados a continuación:

Nuevamente, por favor visite el sitio Web del CDC para información actualizada. Como siempre, en caso de cualquier pregunta, puede contactarnos al 844-889-7579 o bonelink@oif.org.

 

A Message from the OI Foundation about Coronavirus Disease 2019

Update March 26, 2020:

The OI Foundation is making every effort to provide the most up-to-date information about the COVID-19 pandemic for the OI community.

If you are an OI community member who has received a confirmed diagnosis of COVID-19 or are presumed positive by a medical professional, please contact us at bonelink@oif.org. Please share if you have mild, moderate, or severe OI and any other information you feel comfortable sharing.

All information we receive is critical to our medical professionals, researchers and your fellow OI community members.


COVID-19 Q&A Video Sessions 

COVID-19 Q&A (3/19)
Dr. Robert Sandhaus (pulmonologist at National Jewish Health)
Dr. Francis Glorieux (Chair of the OIF’s Medical Advisory Council)
Click here to watch the recording of this session.
Click here to view the full transcription of this recording.

Mental Health and Self-Care during the COVID-19 Pandemic (3/26)
Dr. Kara Ayers (Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities)
Dr. Michelle Fynan (Online Instructor at LA Film School, Online Coach and Therapist)
Click here to watch the recording of this session.
Click here to view the full transcription of this recording.

Orthopedic Perspectives on OI during the COVID-19 Pandemic (3/26)
Jill Flanagan, MD (Children’s Healthcare of Atlanta)
Jeanne Franzone, MD (Nemours/Alfred I. duPont Hospital for Children, Wilmington)
Maegen Wallace, MD (Children’s Hospital & Medical Center, Omaha)
Click here to watch the recording of this session.
Click here to view the full transcription of this recording.

Eating Healthy during the COVID-19 Pandemic
Ashley Reese, MMN, RDN, LMNT (Clinical Pediatric Dietitian)
Stefanie Sacks, MS, CNS, CDN (Culinary Nutritionist and Author of What the Fork Are You Eating?)
Click here to watch the recording of this session.
Click here to view the full transcription of this recording.


 

Update March 13, 2020: The CDC has released new recommendations for people at higher risk for experiencing complications with COVID-19. Please read the full update on the CDC website at https://www.cdc.gov/coronavirus/2019-nCoV/index.html

The current outbreak of 2019 coronavirus (SARS-CoV-2) was first identified in China but has now spread internationally, and has become a major health concern for people in the US. The Centers for Disease Control reports that they expect more confirmed cases in the US in the days and weeks ahead and are working aggressively to control the spread of the virus. The disease caused by SARS-CoV-2 is called COVID-19. COVID-19 causes fever, cough, and shortness of breath. When these symptoms worsen or progress, viral pneumonia is usually found in susceptible individuals. It appears that many individuals who have COVID-19 exhibit only mild symptoms and it is possible that people can be infected and infectious and have no symptoms at all. Among those who do become ill, they may have been spreading the virus for as long as two weeks before they develop symptoms.

At present there is no specific therapy for COVID-19 and there are no specific groups at greater risk of getting infected. BUT, there are groups who are more likely to get severe disease, to require hospitalization, and to have a greater risk of death. These groups include those with lung disease, diabetes, and heart disease. In addition, age, is a factor, with people who are older than 65 years of age more likely to develop severe disease and the risk of death increases with each decade above 60 years of age.

Individuals with OI should follow strictly every recommendation of the CDC and other experts while being aware of unfounded recommendations and even unscrupulous posters on the internet. There is no scientific data available at this time that evaluates any particular approaches unique to the OI community. Expert opinion recommends following these general guidelines:

  • Maintain “Social Distancing”: When in public (or even with visitors to your home) stay at least 6 feet from other people in your immediate area. Do not shake hands or touch the skin of other individuals. Avoid groups of 10 or more people in a confined space.
  • Avoid air travel, cruise ships, and, in areas with high prevalence of infection, public transportation.
  • Avoid close contact with people with respiratory illnesses.
  • While sick, limit contact with others as much as possible.
  • Stay home if you are sick (self-isolation). Family members who live with you should follow exactly the same restrictions as you.
  • Cover your nose and mouth when you cough or sneeze. Best is to cover your mouth and nose with a tissue, immediately discard the tissue, and then wash your hands. Avoid touching your eyes, nose and mouth with unwashed hands; germs spread this way.
  • Clean and disinfect surfaces and objects that may be contaminated with germs. Coronavirus can spread by cough and the virus can live on solid surfaces for many hours if not disinfected.
  • Wash your hands often with soap and water for at least 20 seconds. If soap and water are not available, use an alcohol-based hand rub with at least 60% alcohol, scrubbing all parts of your hands and fingers until dry.
  • Try to maintain a two-week supply of food and water at your home.
  • If possible, maintain a 90-day supply of prescription medications at your home.
  • Get your flu shot if you haven’t received it yet, but consider obtaining it at your local pharmacy rather than a physician’s office or medical center.

What are specific recommendations for those with OI?

People with OI, especially those with more severe forms, who develop pulmonary symptoms due to COVID-19 are likely to have worse respiratory problems than those without OI. Therefore, the recommendations above need to be observed carefully by the person with OI as well as members of their household. Try to keep up with any additional recommendations released by health authorities, especially those specific to your locality.

The OI Foundation has several publications that address respiratory issues in people with OI including a Take Charge of Your Breathing fact sheet in the OIF’s Adult Health Tool Kit. The frequently asked questions section of the fact sheet reminds people that “people with OI are considered to be in the “high risk” group for lung infections as defined by the Centers for Disease Control and Prevention and currently we believe that people with OI are more prone to bronchial infections and pneumonia. Respiratory illnesses can be very serious, even life threatening health problems for people with OI. Given this information it is VERY important that people with OI continue to follow the recommendations of the CDC and to remember that the best source for specific recommendations and answers to your questions is your own local physician or medical center.

The OI Foundation, with the help of its expert partners, will continue to keep the OI community updated as more information becomes available. In the meantime, we encourage you to monitor the official CDC website www.cdc.gov for current updates and recommendations.

For more information, please refer to the OIF’s Fact Sheets listed below

Again, please visit the Center for Disease Control’s website for up to date information. As always, if you have questions please contact us at 844-889-7579 or bonelink@oif.org.

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Update March 6, 2020: The CDC has released new recommendations for people at higher risk for experiencing complications with COVID-19. Please read the full update on the CDC websiteat https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html

As you know, the current outbreak of 2019 coronavirus (COVID-19) was first identified in China but has now spread internationally including to the US.  The Centers for Disease Control reports that they expect more confirmed cases in the US in the days ahead and are working aggressively to control the spread of the virus.

The OI Foundation, with the help of its expert partners, will continue to keep the OI community updated as more information becomes available. In the meantime, we encourage you to monitor the official CDC website www.cdc.gov for current updates and recommendations. As a reminder, the CDC recommends the following preventive actions to help minimize the spread of respiratory diseases:

  • Get your flu shot if you haven’t received it yet.
  • Avoid close contact with sick people.
  • If you are sick, limit contact with others as much as possible. Stay home!
  • Cover your nose and mouth when you cough or sneeze.
  • Avoid touching your eyes, nose and mouth with unwashed hands.
  • Clean and disinfect surfaces and objects that may be contaminated with germs.
  • Wash your hands often with soap and water for at least 20 seconds. If soap and water are not available, use an alcohol-based hand rub with at least 60% alcohol.

If you feel sick with fever, cough or difficulty breathing and have traveled to a site listed on the CDC’s website or were in close contact with someone with the coronavirus in the 14 days before you began to feel sick, seek medical care.  It is recommended before you go to a doctor’s office, emergency room, or urgent care facility, call ahead and tell them about your symptoms.

Again, please visit the Center for Disease Control’s website for up to date information.  As always, if you have questions please contact us at 844-889-7579 or bonelink@oif.org.