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Common Variable Immune Deficiency (CVID) - A Diagnosis Specific Episode
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- čas přidán 18. 08. 2024
- 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 of people living with CVID. In this podcast episode, we will be discussing the symptoms, treatments, and health management associated with CVID with our guest, Charlotte Cunningham-Rundles, MD, Ph.D.
I was diagnosed in 2014 after having ‘breakout’ pansinusitis infections beginning in 2011. I had 2 extensive sinus surgeries within 2-1/2 years to clear the massive infections. I was ‘assertive’ in finding out why I was acquiring these and was fortunate to have professionals that listened and worked with me and each other.
I started IVIG in October 2014 and even with occasional breaks in treatment, my health has improved significantly.
👱🏻♀️❤️🇺🇸🇮🇪🏴🐅🦓
For a newly diagnosed patient with CVID, this podcast answered all the questions! The information on genetics and autoimmune disease was especially useful, and something I had been unable to get answers to. Thank you!
I clicked on this video to coincidently discover that I have an upcoming appointment with Dr Cunningham-Rundles. I guess she really is the Big Deal that my doctor said when he had me make the appointment.
This video was posted here less than a year ago but I’m curious as to when it was made? Has the doctor reexamined her stance on masks for CVID patients since the Covid outbreak? Personally even on infusions and fully vaxxed, I still avoid crowds outside and always where a mask entering another building.
I have learned more from this podcast than any other means of information about my CVID. Thank you so much.
Thank you Dr. Cunningham-Rundles, I am glad you spoke to Autoimmune conditions and CVID, extremely informative ! 👍
This is outstanding presentation. Thank you so much
Thank you for posting this podcast. It was very informative! ***I would be especially interested in hearing more about the things that can trigger CVID into its more active state,*** as Dr Cunningham-Rundles put it in passing.I ask more out of curiosity than for any other reason, since my CVID is already active. (Successful treatment since 2/2016.) I have a quirky theory about my own trigger, but there's no one to ask about it during thee fraught times. Thanks again for the podcast.
According to my immunologist, autoimmune conditions are NOT related to ID.
36:28 Oh how I wish Dr.Cunningham-Rundles were my doctor;
hours ago during call-in appointment with GP, was told that I'm not mask exempt (Health Canada deems _"those who have difficulty breathing"_ *are exempt* from mandatory masking) despite being Rx'd a rescue inhaler upon review of a respirometry test & referring me for a follow-up test + suggested he'd refer me to a pulmonologist due to "immunodeficiency complications".
I explained that mask wear causes shortness of breath just standing carrying on convo + also increases sinus mucosal flow which results in a mask-full of snot & choking on post-nasal drip.
He's also adamant I take inhaled steroids despite my declaration that such previous treatment has severely worsened my lung function & induced steroidal acne. I was asked to stop talking when describing former _documented_ adverse reactions to various forms of steroidal medications so he could relay "what I needed to learn" about how steroids affect progressive lung conditions & inflammation.. Great team on my side here.