Say, what—-Hypogamma-globulinemia, i think that we have almost every letter in the alphabet in that diagnosis. I happened upon a site today, and “rediscovered” this diagnosis. It …
I happened upon a site today, and “rediscovered” this diagnosis. Say, what—-Hypogamma-globulinemia, think that we have almost every letter in the alphabet in that diagnosis. It was the beginning of the CVID diagnosis. I remember that I could not even pronounce the word. Moving onto Invisible Illness: Sjornes diagnosis, and recruiting patients for the aftermath of #AHCA to unite in order to survive.
Originally Published: 10/16; New Updates
Say, what—-Hypogamma-globulinemia, I think that we have almost every letter in the alphabet in that diagnosis. I happened upon a site today, and “rediscovered” this diagnosis. It was the beginning of the CVID diagnosis. I remember that I could not even pronounce the word. I can now, on rare occasions anyway.
I recently received my results for Sjornes disease, and I do not show any antibodies for Sjornes, but I have all of the symptoms. I do wonder if the Sjornes markers are accurate, as I receive tens of thousands of antibodies weekly. Sjornes is an antibody marker tool for diagnosis. Prior research (peer reviewed only) state 70% of people are diagnosed through the antibody and markers for Sjornes. Well, I know dog gone well, I’m so rare I certainly won’t show positive on those tests! Doc does suspect my symptoms may be due to another rare disease, but he stated that it’s also difficult to diagnose. As well, as adding another specialist to my team. We will see.
***Update 6/2017: Sjornes Disease, an autoimmune disease, is in fact, a co-morbidity of a PI. My IGg (Immune system cells) levels have been decreasing and are well below ‘norms” with my current infusions. The IGg Infusions dosage has increased as a result, although still waiting on approval from insurance. According to the specialists, it seems that the CVID (PI) is progressing. Which is NOT what I wanted to hear. After a load of additional testing to rule out other means of IGg loss. The conclusion of IGg levels decreasing, despite IGg replacement therapy, is the “progression of the disease”. It makes complete sense that Sjornes has developed. Of course, my medical team has been treating all of the symptoms that are characteristic of this disease for years. I am not sure, what, if any treatment will be available, other than symptomatic relief. The morale here to others suffering, pay close attention to your body. I knew there was something else going on, although a vague marker test, was inconclusive. The fact that my IGg levels were declining, was a clear indicator that my immune system is now attacking itself in another, severe manner.
Originally Published: 10/16; New Updates:
Update: revamping my blog, it has been extremely difficult due to my eyes, vision and sandpaper feeling due to not making my own tears…hard to focus on anything.
The menu items are difficult, if not impossible, to move on most of WP themes. I know it’s confusing, I created this a year ago, as a personal journey, and don’t want to lose what I do have. As soon as I can tidy up, and make security changes, I will begin development of the PiPatients United (PiPUnited).
If anyone is interested a VERY rough draft of what is envisioned; a general interest link will be posted on THIS Blog, for a brief amount of time, with information on how to submit any interest. Keep an eye on this blog, the initial “rough draft proposal” will be released here, on this blog as a link, on Thursday (approximately) for a limited amount of time, one week. This is due to privacy issues, and the need to gather interest, and move forward. Any responses that I receive will be followed up with, through a secure and private means. Again, any current volunteers for any other non transparent organizations will not be permitted to be involved. PiP United’s sole focus is inclusive of PI patients and those with Invisible Illness and caregivers with intent to aid our fellow peers. We will not be bound by any political or otherwise “rules” that ultimately decrease the quality of life for our PI and II peers. Our focus is patients helping patients in whatever capacity is needed and/or available.
Update 6/17: Still open to other individuals who are interested in building a community to help each other, regarding any and everything (gathering resources, supplies, etc) that we as patients will need due to upcoming #AHCA and the potential aftermath will leave many without medication, etc. Note: I was able to forsee the upcoming chaos in October, when this posted. Since that time, it is evident that I was correct. It was not a guess, I knew that several entities had betrayed many patients, and were doing so for personal profit. I hate that I was correct. I was, and this mission, to save lives, is needed now more than ever.
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.