PID UK - FAQs about CVID
Common variable immunodeficiency (CVID) is an immune disorder characterized by recurrent The symptoms of CVID vary between people affected. People generally complain of severe fatigue. . Key research in the UK was previously funded by the Primary Immunodeficiency Association (PiA) until its closure in. CVID is considered the most prevalent type of primary immunodeficiency. If this type of association is later proven to be a causal relationship, the actual cause of nausea, vomiting, chills, low-grade fever, myalgia (muscle pain) and fatigue. Welcome to the IDF CVID Community Center The IDF Common Variable Immune Deficiency (CVID) Community Center is your online source for credible CVID.
Based on the affected immune mechanisms, PIDs are divided into a number of categories as defined by the International Union of Immunological Societies including immunodeficiencies affecting cellular and humoral immunity, combined immunodeficiency with associated or syndromic features generally associated with T cell immunodeficiencypredominantly antibody deficiencies, diseases of immune dysregulation, congenital defects of phagocyte number, function, or both, defects in intrinsic and innate immunity, autoinflammatory disorders, complement deficiencies, and phenocopies of primary immunodeficiencies [ 2 ].
Among these categories, the predominantly antibody deficiency group accounts for approximately half of all patients with a PID diagnosis [ 1 ]. It is likely that prevalence of PID will continue to increase as the extended recognition of these diagnoses grows, significantly affecting both adults and children at the population level [ 3 ]. With this increased prevalence, there have been major improvements in the clinical care of PID patients, mainly due to improved awareness, earlier diagnosis, and appropriate immunoglobulin G IgG replacement therapies that led to increased life expectancy of individuals with primary antibody deficiency PAD [ 5 — 7 ].
In addition to the improvements in clinical care, morbidity, and mortality, there has been an increased focus on the quality of life QoL in PID patients as a way to improve perceived clinical and psychosocial dimensions of the diseases. Unfortunately, despite improvements in diagnosis and life expectancy, PID patients have impaired QoL [ 8 ]. Self-reported fatigue is the most important factor influencing overall QoL [ 9 ] and is a major prognostic factor for survival, independent from other risk factors in diseases such as chronic myelogenous leukemia patients [ 10 ] and terminally ill cancer patients [ 11 ].
Additionally, fatigue was associated with worse prognosis in patients with heart failure [ 12 ], had negative impact on health status, function, and mortality in an elderly population [ 13 ], and predicted mortality in chronic obstructive lung disease [ 14 ].
In another study, low levels of fatigue independently predicted longer recurrence-free and overall survival from breast cancer, when controlling for biological factors [ 15 ].
Taken together, these data suggest that fatigue could be a powerful indicator of overall survival for many different diseases. Currently, there are no published studies that specifically address the prevalence of fatigue in PID patients. The purpose of this study is to estimate the prevalence of fatigue among PID patients using data from the US Immunodeficiency Network registry and investigate these data for characteristics that may be associated with fatigue.
This registry actively collects validated data on all PID diagnoses, as entered by approved physicians, researchers, and other staff at enrolling institutions [ 16 ].
FAQs about CVID
The study was given Institutional Review Board IRB approvals from participating institutions, and all patients provided consent to include their data in the registry. The USIDnet uses patient registry form, which contained on page 6 a question about presence of fatigue, as one of the constitutional symptoms.
The analyses were based on the answers to this question and others from the core registry form. All PID patients who were reported to have fatigue in the core registry form were included for the general prevalence analysis.
This not known accurately but in the UK probably about About 1 in 50, people have CVID. CVID is a multi-gene disorder, so it has lots of causes, but with thegenome and Bridge project we are getting a better idea every day of the underlying genetic causes.
Does everyone with CVID have the same condition and similar health problems? No there is a whole spectrum of very mild to severe. Some people only get infections and others may get additional complications from a poorly regulated immune system.
Do all people with CVID need immunoglobulin replacement therapy?
Common variable immunodeficiency - Nature's Food Patch
Yes, usually they do and this will be a decision made by your immunologist. What role do environmental factors play in causing CVID? It is a combination of gene and environment that result in expression of most diseases, but no one particular environmental factor is known to be important at the moment in the development of CVID.
At what age can you develop CVID? Cases of CVID can occur at any age but most usually occur in the second or third decade of life. What more do we know about the causes of CVID? This is a complex group of patients. We know of some genes that can cause CVID but for the vast majority of patients the cause is not known.
Clinicians and researchers are starting to unravel the genetics of CVID using faster and cheaper ways of sequencing the DNA of patients. Why do people get CVID at different ages? Genetics are only part of the answer. For many complex diseases the genes we inherit can predispose us to a disorder, but the environment we live in and how genes are switched on and off affect when and how severely we are affected. As we understand more about the underlying causes, we may be able to answer this more fully.
It seems likely that you both have the same genetic predisposition.
- Common variable immunodeficiency
Autoimmunity happens when the body starts to attack its own tissues and organs. It is caused by changes in how the immune system works. The immune system simply stops recognising the difference between what is 'self' auto — meaning belonging to the body and shouldn't be attacked, and foreign organisms that should be. The effects of this autoimmune attack are inflammation and damage to the tissues of the body.
Other types of PID may also have associated autoimmune complications. You read more about the health complications in PIDs here. What proportion of patients with CVID will develop autoimmunity and inflammatory problems? Autoimmunity and inflammation are the most frequent complications in CVID.
This depends on the type of the CVID, its genetic basis and also the health problems, past and present that the person may have.
Fatigue and the wear-off effect in adult patients with common variable immunodeficiency.
In some cases the outcomes, where poor, have to be treated with caution because the BMT was sometimes done on patients who were already ill. Can medication for depression cause CVID? Many medications can cause hypogammaglobulinaemia, a disorder where the body's immune system does make enough or any antibodies. However, CVID is a distinct diagnosis made by your doctor where other causes such as medicines have been ruled out.
My child has CVID and has epilepsy. I have been told that the medication she is on might have caused her CVID. Is there a link? However, CVID is a diagnosis where other causes of low circulating antibodies such as medicines have been ruled out. Anti-epileptics are a common cause of secondary hypogammaglobulinaemia, i.
Common variable immunodeficiency - Wikipedia
It is of course possible for a child to develop CVID and subsequently develop epilepsy and be put on medication for it, in which case the prior diagnosis of CVID would be unrelated to the meds. What suggestions do you have for fatigue associated with CVID? The medical perspective Fatigue is a frequent feature of many conditions that affect the immune system.
For this reason Chronic Fatigue Syndrome CFS requires that underlying disorders are excluded in order to make the diagnosis.