Have You Herd? An IDF Podcast

Wiskott-Aldrich Syndrome or WAS is a unique form of primary immunodeficiency. WAS primarily affects males because it’s an X-linked recessive condition and is characterized by abnormal bleeding and eczema of the skin. To discuss WAS further, we will be talking with our guest, Sumathi Iyengar, the Executive Director of the Wiskott-Aldrich Foundation. Dr. Iyengar is a pediatrician-turned-advocate for WAS after her son was diagnosed at a young age. She is a partner and longtime friend of IDF.

Many people living with primary immunodeficiency rely on injectable medical therapies such as immunoglobulin replacement therapy, or Ig, to maintain healthy lives. Receiving these infusions can be frightening to those who are afraid of needles, and can challenge anyone who has to receive multiple needle pricks. Beyond needle pain, people with PI may also be living with chronic pain, causing issues such as arthritis, inflammation, or muscle aches. Pain management is crucial and necessary to help those suffering from acute or chronic pain. We discuss pain management further with Dr. Amy Baxter, the CEO and Founder of Pain Care Labs and the inventor of the physiological pain blocker product, Buzzy. Buzzy and other Pain Care Labs products can be found on www.paincarelabs.com or www.amazon.com.

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.

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.

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.

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.

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.

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.

Figuring out your journey through life can be tough, especially as you grow older and more independent. One of the best parts of being a teenager is having a little freedom and making your own decisions. In this episode, Keegan Hartman is with us to discuss how to manage our health while learning how to be more responsible for our own life choices.

Common Variable Immune Deficiency, or CVID, is just one of the more than 400 primary immunodeficiencies, characterized by low levels of serum immunoglobulins and loss of antibodies, which causes an increased susceptibility to infection. While it is considered “common” compared to other immune deficiencies, questions still remain about the diagnosis, treatment, and well-being for people living with CVID. In this podcast episode, we will be discussing the symptoms, treatments, and health management associated with CVID with our guest, Dr. Charlotte Cunningham-Rundles.

Hemophagocytic lymphohistiocytosis (HLH) is a severe systemic inflammatory syndrome that can be fatal. HLH occurs when histiocytes and lymphocytes become overactive and attack the body rather than just bacteria and viruses. Join the Immune Deficiency Foundation as we sit down with Dr. Michael B. Jordan, from Cincinnati Children’s HLH Center of Excellence, to discuss the identification and management of HLH. To learn more about inheritance and PI, visit the IDF website: https://primaryimmune.org/about-primary-immunodeficiencies-diagnosis-information/inheritance. To learn more about HLH, how to diagnosis HLH, research and more, please visit: https://www.cincinnatichildrens.org/service/h/hlh.

The transition to college is both stressful and exciting. For those living with a chronic disease like a primary immunodeficiency (PI), adjusting to campus life can be even more challenging. College students with a chronic condition generally require strategies to balance academics, socializing, and managing their disease. In this episode, the Immune Deficiency Foundation explores resources for college students with PI and offers tips for making the most of your college years.

For people with primary immunodeficiency diseases (PI), employment is about more than just making money and job satisfaction. You need a job that will allow you to perform at a high standard with your diagnosis and will offer good health insurance benefits. There are many young people with PI who have amazing jobs. Join this Immune Deficiency Foundation (IDF) podcast and learn how you can be one of them.

People living with chronic illnesses know the physical toll it takes on the body. But it also takes an emotional toll and understanding how you are feeling mentally is as important as understanding how you are feeling physically. This podcast episode explores the emotional and psychological impact of a primary immunodeficiency disease (PI) in young adulthood, the connection between our minds and bodies, and how we can manage this relationship to positively affect our overall health.

Young adults with primary immunodeficiency diseases (PI) must develop independent disease self-management skills as they transition from pediatric to adult-oriented healthcare systems. Join this podcast episode from the Immune Deficiency Foundation (IDF), learn about how young adults can best manage their PI and find a balanced approach to healthcare and life.