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.
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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.
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.
The Immune Deficiency Foundation would like to thank our entire PI community for a great 2020. Let's make 2021 an even better year! Have a happy and healthy holiday season!
The IDF Staff would like to thank the PI community for your continued support in 2020. Here's to an even better 2021!
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. 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., from RTI International.
IDF's National Summit session, "IDF National Summit Closing Remarks" was presented by IDF President & CEO, John G. Boyle on November 8, 2020.
IDF's National Summit session, "Keynote: The Power of Plasma: Person to Person, the Process, Beginning to End" was presented by Amy Efantis, President and CEO of PPTA on November 8, 2020.
IDF's National Summit session, "Ig Therapy: IVIG & SCIG: Tips & Tricks" was presented by M. Elizabeth Younger, CRNP, PhD on November 8, 2020.
IDF's National Summit session, "IDF and YOU!" was presented by IDF Staff members, Tammy C. Black, Marcy Chang, and Hector Garcia on November 8, 2020.