Immune Deficiency Disorder
I’m through accepting limits. ‘Cause someone says they’re so. Some things I cannot change. But ’til I try I’ll never know - Defying Gravity, Wicked
image by: Immune Deficiency Foundation
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My Illness Is NOT My Life's Story
When I was diagnosed with a rare, chronic condition at the age of 20, I couldn’t have imagined the struggles that came along with it. Nearly four years later, I write on how my illness affects my daily routine... but never my decision to chase after my dreams.
Just 20 more minutes. You just have to get through 20 more minutes without fainting. I grab onto the wall and clumsily reach for the bathroom’s door handle to keep myself upright, where I’ve been hiding for the last five minutes trying to regain my composure. My hands are shaking, and my head is spinning faster than a merry-go-round. It’s only the start of the day, but already, I need to lie down. I need to eat something. I…
Resources
My IG Source
We are a community committed to helping each other and our loved ones manage a life with primary immunodeficiency (PI). Here, you can find information on PI and connect with our Ig Community Support Team Advocates—people who live with or love someone with PI.
How People With Weakened Immune Systems Are Navigating The Coronavirus
Volberding said it's important to watch out for this part of the population. "Being immunocompromised might not so much increase your likelihood of getting infected with something like COVID-19," he said, "but it might make the outcome of that infection much worse."
What does it mean to be immunocompromised? And why does this increase your risk of coronavirus?
The world has been primed to worry about these people contracting COVID-19 because they’re more susceptible to severe illness when infected with the range of viruses that usually cause respiratory illness, including common colds. However, because the severe illness in COVID-19 is actually a result of excessive immune responses, immunocompromised people don’t seem to be presenting with more severe disease than the general population.
Is it possible to boost your immune system?
Our bodies’ immune systems are broken down into two different categories, innate and adaptive. The former is made up of non-specific proteins and cells that come to action in any type of injury or illness, even a scrape to the leg. But the latter—the adaptive immune system—is far more specific. When you get a cold, the flu, or the novel coronavirus, cells within your adaptive immune system rush out to identify exactly what that sickness is.
'The Disease of the Century': Reporting on the Origin of AIDS
A veteran medical journalist for The New York Times remembers covering the indifference, confusion, and fear of the epidemic's early years.
A Possible Cure for "Bubble Boy" Disease Will Cost $665,000--Per Dose
The gene therapy could save kids with severe combined immune deficiency.
Drug Shortage Leaves Patients Without Immune-Disorder Treatment
A shortage of immune globulin has forced hospitals to ration treatments. ‘For the patients affected, it’s been very significant’
Primary Immune Deficiency
One of the biggest challenges for people who have a PID is the battle to get a correct diagnosis. For many it takes years, and often people develop additional complications due to the delay in diagnosis and treatment. Some people with PIDs refer to themselves as “zebras”.
The Boy in the Bubble Moved a World He Couldn’t Touch
The epitaph on David Phillip Vetter’s gravestone observes correctly that “he never touched the world.” How could he have? From a few seconds after his birth until two weeks before his death at age 12, David lived life entirely in one plastic bubble or another. Touching the world would have killed him in fairly short order. Even his two weeks outside a plastic cocoon were spent in a hospital trying, futilely, to stave off the inevitable.
What is Severe Combined Immunodeficiency (SCID)?
Severe Combined Immunodeficiency (SCID) may be best known from news stories and a movie in the 1980s about David, the Boy in the Bubble, who was born without a working immune system. Caused by defects in any of several possible genes, SCID makes those affected highly susceptible to life-threatening infections by viruses, bacteria and fungi.
What Living With A Challenged Immune System Taught Me About Happiness
So yes, I am sick. My immune system is challenged because of CVID, a primary immunodeficiency disorder that leaves me highly susceptible to recurrent infections and illness. Because of it, each month I receive a treatment that contains antibodies collected from the plasma that healthy people have donated.
My Illness Is NOT My Life's Story
When I was diagnosed with a rare, chronic condition at the age of 20, I couldn’t have imagined the struggles that came along with it. Nearly four years later, I write on how my illness affects my daily routine... but never my decision to chase after my dreams.
IG Living
Our mission is to support the IG community through education, communication and advocacy.
Immune Deficiency Foundation
The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.
Immune Deficiencies Foundation Australia
The Immune Deficiencies Foundation Australia (IDFA) is a not-for-profit health promotion charity raising awareness and caring for people who have Primary Immune Deficiencies (PIDs).
Immune Deficiencies Foundation of New Zealand
We are a non-profit organisation dedicated to supporting children, teenagers and adults with diagnosed Primary Immune Deficiency (PID) disorders as well as bone marrow and liver transplant children.
International Patient Organization for Primary Immunodeficiencies
IPOPI is the leading advocate for primary immunodeficiencies patients worldwide.
PID UK
Primary Immunodeficiency UK (PID UK) is an organisation supporting individuals and families affected by a primary immunodeficiency in the UK. Our aims are to help ensure that those affected by a primary immunodeficiency have the knowledge needed to manage their condition effectively and to ensure that their health needs are understood and addressed by those involved in policy and delivery of healthcare.
Jeffrey Modell Foundation
The Jeffrey Modell Foundation is a public charity devoted to early and precise diagnosis, meaningful treatments, and ultimately, cures - through clinical and basic research, physician education, patient support, advocacy, public awareness and newborn screening.
Our Little Hero
This blog is about our 5 year old little boy Seth and his battle with Severe Combined Immune Deficiency (SCID). At the point of beginning this blog he is being considered for a second bone marrow transplant in order to save his life.
Cuvitru
A 20% subcutaneous immunoglobulin (SCIg) replacement therapy for primary humoral immunodeficiency (PI) in adults and children 2 years of age and older.
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