Btw I have a whooole ton of things to share about Charlie and Howard, but I sadly do not have the energy or brain power to do it justice. But pls know that when I get over this I will be talkin up a storm.

Me, CVID, and Facts

I apologize in advance for how long this post is.

So, a lot of people have been messaging me asking what CVID is. I’m going to use the words from this webpage (https://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/common-variable-immune-deficiency) since it explains it far better than I ever could. I want to preface this by saying that I am in no way, shape, or form trying to gain sympathy, pity, or anything like that. I am not complaining. I know that my CVID could be INFINITELY worse, and I am grateful that mine is as tame as it is.

My complications of CVID are that I have autoimmune hemolytic anemia, arthritis in my left knee and both my wrists, an enlarged spleen, gastrointestinal issues, and chronic lung disease. These have caused a lot of self consciousness for me. My enlarged spleen causes my stomach to protrude slightly, which often prompts people to ask how far along I am in my “pregnancy.” My anemia caused many issues with me being in marching band due to the elements we were exposed to regularly. My lung disease makes it so I have to carry at least 2 inhalers with me everywhere I go, and I have to take breathing treatments extremely often. My gastrointestinal issues make me self conscious for reasons I’m sure you can guess. I do not do immunoglobulin replacement therapy due to the fact that we cannot afford it, since CVID is not a “treat this until it’s fixed” kind of thing, rather being a “treat this until you die” kind of thing. Recently though, we have been reconsidering due to how sick I’ve been getting. Anyways, enough about me. Now on to the facts.

Common Variable Immune Deficiency (CVID) is one of the most frequently diagnosed primary immunodeficiencies, especially in adults, characterized by low levels of serum immunoglobulins and antibodies, which causes an increased susceptibility to infection. While CVID is thought to be due to genetic defects, the exact cause of the disorder is unknown in the large majority of cases.

Compared to other human immune defects, CVID is a relatively frequent form of primary immunodeficiency, found in about 1 in 25,000 persons; this is the reason it is called “common.” The degree and type of deficiency of serum immunoglobulins, and the clinical course, varies from patient to patient, hence, the word “variable.” In some patients, there is a decrease in both IgG and IgA; in others, all three major types of immunoglobulins (IgG, IgA and IgM) are decreased. In still others there are defects of the T-cells, and this may also contribute to increased susceptibility to infections as well as autoimmunity, granulomata and tumors. To be sure that CVID is the correct diagnosis, there must be evidence of a lack of functional antibodies and other possible causes of these immunologic abnormalities must be excluded. Frequent and/or unusual infections may first occur during early childhood, adolescence or adult life. Patients with CVID also have an increased incidence of autoimmune or inflammatory manifestations, granulomata and an increased susceptibility to cancer when compared to the general population. Sometimes it is the presence of one of these other conditions that prompts an evaluation for CVID. The medical terms for absent or low blood immunoglobulins are agammaglobulinemia and hypogammaglobulinemia, respectively.

Both males and females may have CVID. In the majority, the diagnosis is not made until the third or fourth decade of life. However, about 20% of patients have symptoms of the disease or are found to be immunodeficient in childhood. Because the immune system is slow to mature, the diagnosis of CVID is generally not made until after the age of 4. The usual presenting features of CVID are recurrent infections involving the ears, nasal sinuses, bronchi (breathing tubes) and lungs (respiratory tract). When the lung infections are severe and occur repeatedly, permanent damage with widening and scarring of the bronchial tree, a condition termed bronchiectasis, may develop. The purpose of treatment of lung infections is to prevent their recurrence and the accompanying chronic and progressive damage to lung tissue. Patients with CVID may also develop enlarged lymph nodes in the neck, the chest or abdomen. The specific cause is unknown, but enlarged lymph nodes may be caused by infection, an abnormal immune response or both. Similarly, enlargement of the spleen is relatively common, as is enlargement of Peyer’s patches which are collections of lymphocytes in the walls of the intestine. In some cases, other collections of inflammatory cells, called granulomas, can be found in lungs, lymph nodes, liver, skin or other organs. They may be a response to an infection, but the cause is not really known. Although patients with CVID have depressed antibody responses and low levels of immunoglobulins in their blood, some of the antibodies that are produced by these patients may attack their own tissues (autoantibodies). These autoantibodies may attack and destroy blood cells, like red cells, white cells or platelets. Although, most individuals with CVID present first with recurrent bacterial infections, in about 20% of cases the first manifestation of the immune defect is a finding of very low platelets in the blood or severe anemia due to destruction of red cells. Autoantibodies may also cause other diseases such as arthritis or endocrine disorders, like thyroid disease. Gastrointestinal complaints such as abdominal pain, bloating, nausea, vomiting, diarrhea and weight loss are not uncommon in CVID. Careful evaluation of the digestive organs may reveal malabsorption of fat and certain sugars or inflammatory bowel disease. Some patients with CVID who may not be receiving optimal immunoglobulin replacement therapy may also develop a painful inflammation of one or more joints. This condition is called polyarthritis. In the majority of these cases, the joint fluid does not contain bacteria. To be certain that the arthritis is not caused by a treatable infection; the joint fluid may be removed by needle aspiration and studied for the presence of bacteria. The typical arthritis associated with CVID may involve the larger joints such as knees, ankles, elbows and wrists. The smaller joints, like the finger joints, are rarely affected. Symptoms of joint inflammation usually disappear with adequate immunoglobulin therapy and appropriate antibiotics. In some patients, however, arthritis may occur even when the patient is receiving adequate immunoglobulin replacement. Finally, patients with CVID may have an increased risk of cancer, especially cancer of the lymphoid system or gastrointestinal tract.

CVID should be suspected in children or adults who have a history of recurrent bacterial infections involving ears, sinuses, bronchi and lungs. The characteristic laboratory features include low levels of serum immunoglobulins, including IgG, often IgA and sometimes IgM. Another part of the diagnosis of CVID is to determine if there is a lack of functional antibody. This is done by measuring serum levels of antibody, against vaccine antigens such as tetanus or diphtheria, measles, mumps, or rubella, hemophilus or pneumococcal polysaccharide. Patients with CVID have very low or absent antibody levels to most of these vaccines. Immunization with killed vaccines is used to measure antibody function, and this functional testing is crucial prior to beginning treatment. These tests also help the physician decide if the patient will benefit from immunoglobulin replacement therapy and can be key in obtaining insurance authorization for this therapy. The number of B- and T-lymphocytes may also be determined and their function tested in tissue cultures.

The treatment of CVID is similar to that of other disorders with low levels of serum immunoglobulins. In the absence of a significant T-lymphocyte defect or organ damage, immunoglobulin replacement therapy almost always brings improvement of symptoms. Immunoglobulin is extracted from a large pool of human plasma; it consists mostly of IgG and contains all the important antibodies present in the normal population. Patients with chronic sinusitis or chronic lung disease may also require long-term treatment with broad-spectrum antibiotics. If mycoplasma or other chronic infections are suspected, antibiotics specific for those organisms may be indicated. If bronchiectasis has developed, a daily pulmonary toilet regimen (chest physiotherapy and postural drainage) may be needed to mobilize the secretions from the lungs and bronchi and make them easier to cough up. Patients with gastrointestinal symptoms and malabsorption should be evaluated for the presence of Giardia lamblia, rotavirus and a variety of other gastrointestinal infections. In some cases inflammatory bowel disease is found, and this is treated by the medications normally prescribed for patients who are non-immunodeficient. Maintaining a balance between the immunosuppression used to control the autoimmune process while avoiding compounding the defects of the underlying primary immunodeficiency requires close cooperation between the patient and the various specialists involved in their care. If autoimmune or inflammatory disease, granulomas, or tumors develop, the treatment is usually the same as would be given to a person with a normal immune system. However when patients with CVID have these complications, there is a tendency for them to be less responsive to therapy. Regular checkups including lung function are recommended.

Immunoglobulin replacement therapy combined with antibiotic therapy has greatly improved the outlook of patients with CVID. The aim of the treatment is to keep the patient free of infections and to prevent the development of chronic inflammatory changes in tissues. The outlook for patients with CVID depends on how much damage has occurred to their lungs or other organs before the diagnosis is made and treatment with immunoglobulin replacement therapy started, as well as how successfully infections can be prevented in the future by using these therapies. The development of autoimmune disease, inflammatory problems, granulomata or malignancy can have a significant impact on the quality of life and response to treatment.

Approximately 25 percent of people with CVID have an autoimmune disorder, which occurs when the immune system malfunctions and attacks the body's tissues and organs. The blood cells are most frequently affected by autoimmune attacks in CVID; the most commonly occurring autoimmune disorders are immune thrombocytopenia purpura, which is an abnormal bleeding disorder caused by a decrease in cell fragments involved in blood clotting called platelets, and autoimmune hemolytic anemia, which results in premature destruction of red blood cells. Other autoimmune disorders such as rheumatoid arthritis can occur. Individuals with CVID also have a greater than normal risk of developing certain types of cancer, including a cancer of immune system cells called non-Hodgkin lymphoma and less frequently, stomach (gastric) cancer.

Now you know about CVID!

emptying clipboard w items numbered

1. https://www.bing.com/search?q=brensan+frasier+broke&go=Search&qs=n&form=QBRE&pc=SMSM&sp=-1&pq=brensan+frasier+broke&sc=2-21&sk=&cvid=87F0DCBEAF3F47B1B5354421381C719B 2. Canada fails to grasp scale of social media 'bot' use in politics…1 day ago 3. https://www.theguardian.com/world/2018/apr/12/canada-bots-twitter-politics-social-media 4. I saw this RV post in my Tumblr "feed" n i heard in my mind it asked, "Do you think those people are really people?" I said, my understanding is that people are nit real people here. ..... 5. I saw this RV post in my Tumblr "feed" n i heard in my mind it asked, "Do you think those people are really [real] people?" I said, My understanding is that people are nit [not] real people here. ..... 6. https://www.upi.com/Top_News/World-News/2018/04/13/Airport-workers-in-Canada-fatally-shoot-rescue-dog-that-escaped-onto-runway/1791523602180/ 7. Canada airport workers shoot rescue dog that escaped onto runway By Ray Downs April 13, 2018 at 3:09 AM 8. https://www.upi.com/Top_News/World-News/2018/04/12/Canadian-PM-Justin-Trudeau-rules-out-airstrikes-in-Syria/3431523510222/?st_rec=1791523602180 9. In an interview with Radio-Canada, Trudeau pointed out that Canada is already conducting military operations in Latvia and Iraq and has plans to deploy to Mali. 10. https://mobile.twitter.com/Canada/status/984565721257701376 11. When they’re not busy preparing for space missions, Canada’s astronauts spend time encouraging youth to pursue their goals through education, proving that you can send a Canadian to outer space, but they always come down to Earth.#InternationalDayofHumanSpaceFlight 🚀💫pic.twitter.com/gWoVikPhk1 3:55 PM - 12 Apr 2018 12. https://mobile.twitter.com/JustinTrudeau 13. The photos of the people a bit disturbing but fit for the way of things here. Disturbing n horrible. 14. "I'm trying to say something you're saying is inaccurate but not," the devil said. "Oh god. I can't go on. I'm doing too much," the devil said. It was obsessing over a area where i mentioned the devil was making me sweaty. It was pressing some torment over that i am supposed to not imply that it's out of the blue. It has done that before. It made me really hot one day out of the blue after I wokeup. I may not have been sweatythen. But I feel to say the devil has done sweaty out of the blue before. It tries to pretend because it's because I'm upset. "You move around -- not," the devil said. I don't really move around much. But it presses I get sweaty, I know it makes it up. It's fromme yelling, etc. The devil just was tormenting n pressing i was to like tell or be pressured I am to say I move around but i don't think I really move around much really. It makes me sweaty n i don't think its really happening at points. "Sometimes you -- not that. But I must go," the devil said. I don't think it matters if i move around or not. It's not much if i do. But the sweating, it is made up right. "I do say you are sweaty when something happens here. Oh god. It is not really something that happens," the devil said. "I don't know what to do but i must go. I can't be doing this," the devil said. 15. Some bad attacking by the devil pressing i was supposed to see myself as old, n it was pressing i was supposed to be disgusting as it making mucus in my nasal area n i was not blowing my nose but doing something else to get rid of the mucus; n the devil was doing some other things. ..... 16. Some bad attacking by the devil pressing i was supposed to see myself as old, n it was pressing i was supposed to be disgusting as it was making mucus in my nasal area n i was not blowing my nose but doing something else to get rid of the mucus; n the devil was doing some other things. ..... 17. https://en.m.wikipedia.org/wiki/Canada 18. Canada's southern border with the United States is the world's longest bi-national land border. Canada is sparsely populated, the majority of its land territory being dominated by forest and tundra and the Rocky Mountains. It is highly urbanized, with 82 percent of the 35.15 million people concentrated in large and medium-sized cities, many near the southern border. Its capital is Ottawa, and its three lar 19. Although similar terms in other languages have described an event marking large scale migration of a specific population from a place of origin, such as the biblicalaccount of Israelites fleeing from Assyrianconquest (circa 740 BCE), in English, the term refugee derives from the root wordrefuge, from Old French refuge, meaning "hiding place". It refers to "shelter or protection from danger or distress", fromLatin fugere, "to flee", and refugium, "a taking [of] refuge, place to flee back to". In Western history, the term was first applied to French Huguenots, after the Edict of Fontainebleau (1540), who again migrated from France after the Edict of Nantesrevocation (1685).[citation needed] The word meant "one seeking asylum", until around 1914, when it evolved to mean "one fleeing home", applied in this instance to civilians in Flanders heading west to escape fighting in World War I.[5] Legal definitions Histor 20. https://en.m.wikipedia.org/wiki/Refugee