I am a patient with a Primary Immunodeficiency (PI): Common Variable Immune Disorder (CVID), also a SCIDS carrier (Bubble Boy), and other immune disorders. As well as the comorbities (i.e., autoimmune, etc) that we suffer from because of a failing immune system. I am creating a community of PI patients that addresses my journey, and expanding to the needs of our community. This opportunity and idea has developed over the course of my PI diagnosis. The resulting need that I have witnessed, proves that we, as patients need more help. Who can be there for us? Why, us, of course.
About one year ago I began this sporadic blog, wanting to contribute, in any way. My story is Roughly outlined in the form of this original blog. I am also expanding, to a greater platform. My Aim is to offer support, from original diagnosis, or those suffering long term, key factors that help to maintain our health, infusion discussions, preferred pharmacies (that offer financial assistance) IGg discussions, reviews, side effects, personal encouragement and struggles, resources available to us, insurance input and navigation, and life with an invisible illness. How do I think I can manage this? From collective. patient experiences. All AGES of PI patients and caregivers are invited to read, comment, email, or follow. In our community, we, the patients are the ONLY ones that do understand each other’s needs. The agencies, organizations, medical specialities, as hard as they try, cannot relate to the real aspects of living as a Pi patient. We continue to be unrepresented or underrepresented, to the immediate needs And issues related to PIs, Specifically, CVID. The PI related death toll continues to increase.
We, the patients, can help one another, without being straddled by any organization, or otherwise, as we alone know the helplessness and hopelessness that we can feel, may experience, and have watched our peers suffer.
I have been shut down once, literally. This is a blog, there is more to come…. I will keep those who have expressed interest informed. Google the title If I am shut down again, or email me at firstname.lastname@example.org. I’m moving to a website, and At this date, interest and skills available are the first steps needed, to move forward. Email email@example.com Sincerely, Debra from St. Louis I am a patient with primary immunodeficiencies. I am not endorsed nor paid by any IGg or drug manufacturer, specialty pharmacy, or organization, the views are mine, and mine alone.