This podcast is a service of the Immune Deficiency Foundation, or IDF, a nonprofit organization dedicated to improving the diagnosis, treatment and quality of life of people diagnosed with primary immunodeficiency, or PI. People living with PI are the zebras of the medical world & the IDF community is one big zebra herd.
To learn more about primary immunodeficiency and the PI community, please visit the IDF website at www.primaryimmune.org. If you have any questions you would like to be answered, email us at firstname.lastname@example.org.
Special thanks to Bryson Kemp for scoring this podcast! www.brysonkempmusic.com
Genetic Counseling - Part of the SCID Compass Series
Receiving advice or support after diagnosis of a genetic condition can be overwhelming for families. One resource for information about the condition and for counseling related to living with the uncertainties and the concern about your child is genetic counseling. Genetic counselors work alongside your medical team to advise individuals and families affected by genetic disorders like Severe Combined Immunodeficiency, or SCID. Listen as Barbara Biesecker, PhD shares her expertise in genetic counseling.
A Year In Our Lives In The Age Of COVID-19 - Part Of The Teen Series
As we continue to battle COVID-19 into 2021, everything around us seems to be changing - attending school is now virtual, seeing our friends is done socially distant while wearing a mask, vacation plans are being canceled or rescheduled, and so much more. For teens living with PI, fear, anxiety, and loneliness may be overwhelming, as many try to stay isolated to keep themselves healthy. Today, we will be talking with a panel of young adults living with PI to discuss how they have coped during the age of COVID-19, including some tips and tricks to feel less isolated while staying at home.
Importance Of Long-term Follow-up After Treatment - Part of the SCID Compass Series
Severe Combined Immunodeficiency, or SCID, is a life-threatening primary immunodeficiency, typically diagnosed at birth. Early detection is critical for these children, as is the prevention of infection and early treatment. With early treatment, most children with SCID should be able to develop their own working immune system. While most families tend to focus on the best course of treatment, such as hematopoietic stem cell transplantation or gene therapy, long-term care or follow-up is necessary to maintain a healthy life. Here with us to discuss the importance of long-term follow-up after treatment is Jolan Walter, MD, PhD.
Telemedicine: Getting Healthcare Online
Making in-person doctor’s appointments and checkups have always been the norm for all of us. However, with the spread of the coronavirus, many of us have tried to minimize entering new spaces. It can be daunting, especially for those living with primary immunodeficiency, who are more susceptible to bacteria and infections. Luckily, many healthcare providers have transitioned over to telehealth, or virtual healthcare, due to the ongoing pandemic. Today, we will be discussing the benefits and challenges of virtual healthcare with Saira Haque, Ph.D., the Senior Health Informaticist and Virtual Care Portfolio Leader with Research Triangle Institute, or RTI International, an independent, nonprofit institute that provides research, development, and technical services.
Navigating Flu Season
During the fall and winter months, as we begin to bundle up for the cold weather, we must also remember it’s time to protect ourselves during flu season. Influenza, commonly referred to as the flu, is typically characterized by the onset of fever or feeling feverish/chills, aching muscles, sore throat, and a cough. For people living with a primary immunodeficiency, the flu can cause severe complications, beyond those just mentioned, such as pneumonia or bronchitis. By taking preventative measures, such as vaccination, members of the PI community can have a decreased chance of being exposed. Listen as we discuss navigating flu season with PJ Maglione, MD.
All About Plasma
People living with a primary immunodeficiency, or PI are missing key parts of their immune system that help fight infections. Some types of PI leave people unable to make antibodies of their own. Many individuals living with PI rely on immunoglobulin replacement therapy (or Ig) to provide the antibodies that we don’t make on our own. Those antibodies are necessary to fight off bacteria and viruses. These replacement antibodies come from human plasma. This plasma is collected from volunteers and is used to make Ig and other plasma-derived therapies that are necessary to the survival of many living with PI as well as other rare diseases. We will be discussing the importance of plasma with Amy Efantis, the President & CEO of the Plasma Protein Therapeutics Association or PPTA, an organization representing more than 850 human plasma collection centers in North America and Europe.
Customer ReviewsSee All
Super informative and well done!
Love Getting More Knowledge
I love getting any and all knowledge I can and especially up to date information. I don't enjoy reading articles. Hearing a conversation while I am working on things is such a great way to learn more about my CVID and educate myself on new research that is going on, how it effects us and gain more knowledge. Thanks for offering this!!
The IDF is a godsend to those of us with PI and I love that this podcast is geared towards young adults too! As someone with CVID, I am so grateful for them!Love the first episode and can’t wait for more to come!