Inherited Common variable immunodeficiency (CVID)
Genetics are a huge part of our makeup we are a generational being...
The test have returned and this is the diagnosis faced in my life now. The most difficult thing is the sadness regarding the nieces and a nephew who are suffering in the dark as to why their bodies are self destruction. They have no medical intervention. This greatly effects life expectancy. I must inform my siblings, the generation of those there after and so on to be tested and to seek intervention. To do this while guarding the hearts of those who have no comforter.
I have an 8 year old and a 12 year old. The infusions can sorta wipe you out a bit for a few days. Best case only one every 4 weeks. But it sounds more likely that it will ramp up to that. I need courage. I need tenderness to strengthen my heart. Knowing that siblings are in a untreated state, know now what took my moms life. All these thing flood my mind a white wash of thoughts.
The general fatigue and lethargy is so progressive. This has gone undiagnosed for some time now and many years of repeated resistant lung infections of bronchitis and pneumonia. You know I see the sweet mercy. I asked why? Why do i get all this freaky illness that have left me feeling humiliated, demised,demeaned and folks including medical and family acting as if this has all been in my head. YEARS OF THIS! IT LEFT ME DOUBTING MY OWN CHARACTER AND SANITY AT TIMES. SOMEONE i THINK IT WAS Marsha SENT ME A LITTLE BOOK ON MINISTERING TO THOSE WITH CHRONIC ILLNESS. well at THE HOSPITAL DURING THE INFUSIONS FOR MYSELF THERE i WILL BE...WITH A CHOICE OF THINKING AND BEING THERE FOR ME AND CONSUMED WITH "me" OR EXITING THIS VORTEX INTO THE COMPASSION NOT ONLY FOR MYSELF BUT FOR THOSE AROUND ME.
with THE SAME COMFORT WE HAVE BEEN COMFORTED WE SHALL COMFORT OTHERS.
Must be a lot of folk needed comfort cause here it comes. Please remember to comfort my heart my dear friends and family. I will need the bracing up as I go forward. I can not let this stop who I am within my heart.
Man, it has really been one thing health wise after another for so many years. Understanding is the beginning of knowledge it will be then that I can walk in wisdom once I exercise the knowledge there is for me to gain.
A Wonderful post gave me a nice dose of
God works all things to his Glory
Everything to harm us is turned to glorify Him
May this walk given me to undertake be done in such a way that i remain unfettered by fear, bitterness and the potential effects of treatment.
Treatment usually consists of immunoglobulin therapy, which is an injection of human antibodies harvested from blood donations:- intravenous immunoglobulin (IVIG, most common treatment in the US)[9]
- subcutaneous immunoglobulin G (SCIG, relatively new treatment in the US and UK)
- intramuscular immunglobulin (IMIG, less effective, painful)
IG therapy can't be used if the patient has anti-IgA antibodies but in this case, products low in IgA can be used; subcutaneous delivery also is a means of permitting such patients to have adequate antibody replacement.
IVIG treatment can be received by patients with a complete IgA deficiency if the IgA is completely removed from the treatment.
Disease Information
Hypogammaglobulinemia - Overview
Hypogammaglobulinemia essentially means antibody deficiency, and includes numerous primary immune deficiency diseases such as Common Variable Immune Deficiency (CVID). Unlike AIDS or chemotherapy-induced immune deficiency, primary immune deficiencies are considered inherent, perhaps genetic.
One of the rarest forms of hypogammaglobulinemia, Severe Combined Immune Deficiency, is nicknamed the "boy-in-the-bubble" disease - a somewhat popular example known to movie viewers.
Both Common Variable Immune Deficiency (CVID) and IgA deficiency, whereas antibodies are decreased but not absent, are much more common. The approximate rate for CVID is 1:50,000 persons and the rate for IgA deficiency is as frequent as 1:750 individuals.
As the immune system is quite complex, CVID often involves additional defects in the immune system.
Common Variable Immune Deficiency (CVID) is mild to life-threatening: dependent on resistance to infection, treatment success, and if complications occur. Significant risk of developing certain cancers and autoimmune illness also exists for patients.
Inherited Immunodeficiencies: Common Variable Immunodeficiency (CVID)
Alternate Names: CVID
Definition
Common variable immunodeficiency (CVID) is an immune system disorder which typically affects males and females in the third or fourth decade of life. However, it may also be seen in children. It is characterized by low levels of antibodies (another name for immunoglobulins) in the blood stream and an increased susceptibility to infections.The diagnosis of common variable immunodeficiency is suspected when the patient has low levels of antibodies in the blood stream, a poor immune response to vaccines, and a history of recurrent infections. Patients with CVID develop recurrent infections of the sinuses, ears, nose and lungs. They may also develop enlarged lymph nodes (palpable glands in the neck and groin) or an enlarged spleen. Infections of the gastrointestinal tract may also occur. Individuals with CVID have an increased incidence of malignant lymphomas and autoimmune disorders such as lupus, rheumatoid arthritis, inflammatory bowel disease and autoimmune hemolytic anemia.
Influencing Factors
Pattern of InheritanceGenetic factors do play a part in the development of common variable immunodeficiency. However, there is no single gene mutation (mistake) that can be identified. Environmental factors may also influence the development of CVID.
Treatment Strategies
Treatment for common variable immunodeficiency includes monthly infusions of gammaglobulin (IVIG) and oral antibiotics to prevent infections. Prognosis is variable and may depend on the severity of lung disease prior to diagnosis and the occurrence of autoimmune disease or malignancy. Patients are encouraged to lead a healthy lifestyle, which includes good nutrition and regular exercise.More detailed information can be found here.http://emedicine.medscape.com/article/1051103-overview
11 comments:
glad you have a diagnosis, sweetheart.
Sweet sis, I love you, and you will remain in my prayers.
I can only imagine the flood of thoughts and emotions that you are having- with dealing with this news. I had never heard of this before. I will be praying for you - that God will give you the strength and the courage that you need,
Lisa :o)
On one hand I am happy you have an answer on the other hand I am sorry that your going through this, your a very strong lady and I know your strength, prayers and your love for our Lord will help assist you through this, God has blessed you with such an awesome husband and he will be of great help to you. I have felt like people thought and still think at time's that my depression I have a tendency to suffer with from time to time is all in my head and it is so hurtful, so I know what your feeling. I will pray that our Lord will be with you and to continue to keep giving you strength.
LOVE YOU
Hugs to all~
Annette
Certain diseases have been passed on in my family specially heart, diabetes, arthritis and ear diseases. Gotta just live with them.
Arthritis is a immunity deficiency blood disorder I read.
I the US you have all the info and medical expertise avaialbe in the 3rd world its either non-available or too exppensive.
I'm glad you know what is going on, but I'm sorry you're sick.
I came across your website as I was looking for info on CVID. My 9 year-old grandson was diagnosed when he was 10 months old. It's been a hard battle for us.There have been times when I thought we were going to loose him. The Lord has brought him through each illness. In Feb. 2010 he had C-Diff. After prayer with a friend he was released form the hospital in 3 days.I know God answers my prayers. He does it every day.His doctor has never suggested the treatments and that is what I was looking for. He said that as long as Kobe had some immune factors he could not receive treatments. I'm trying to learn as much as I can. For 2 years he seemed to have outgrown it tn this past year he stayed sick for months. He can no longer attend school. I was looking for financial aid to enroll him in a private school on line. All I have found is help for college students. God be with you on your journey.
I also have cvid. I spent my life being told I was making it up, being dismissed by doctors and family. I am declining and still being treated in a patronized manner. Unable to take IvIg due to reaction. Last week saw a derm for a weird skin rash and node on chest. Was told nothing. Oddly same day made appt with reg doc and had high fever and lung infection. Have been ill whole life and do not know where to turn. Have Lymphoma like symptoms but no work up. I am ill. I am tired and no one will listen. I need a caring immunologist. Any ideas? Have many autoimmune issues and no response to pneumovax. Docs do not get we are seronegative. Thus say labs fine. Am 61yo and lung damage and left side very affeted, Derm had nerve to say cvid mild disorder. I am not. Sonja
THIS IS FOR SONYA. POSTED APRIL 2,2011.
PLEASE DO NOT GIVE UP ON BEING DIAGNOSED. I WAS JUST DIAGNOSED IN THE SPRING OF 2011 AFTER MANY DIFFERENT DIAGNOSES. --- MY PULMONOLOGIST REFERRED ME TO AN IMMUNOLOGIST WITH SO MUCH COMPASSION. ---SHE IS LOCATED IN PORT CHARLOTTE, FLORIDA AND HER NAME IS DR. USHA CHANDRAHASA,MD ---SONYA,IT IS MY PRAYER GOD WILL LEAD YOU EXACTLY WHERE YOU NEED TO BE. --- PEACE
I have CVID and have been doing treatment now for 7 years I started on IVIG and 6 months ago started SUBQ my levels on SUBQ are so much better. I had all the ITS IN YOUR HEAD too, and I understand your anguish. You will feel somewhat better the IVIG just takes time it took me 6 months to a year. I still get the wierd infections but antibiotics work faster now. No one in my family as CVID so it was hard for me to believe I had what they think is a genetic illness, although Ive heard from many that Epstein Barr is common before the onset and I did suffer a severe case in my late 20's at 31 I had my 1st and only child and started feeling ill 6 months later,it took over 3 years to get diagnosed and they said that was quick. Not quick enough for me. (my Daughter is ok Ive had her check) I tooo live in FL I was diagnosed at SHands in Gainesville but now do my own SUBQ and See a good doc in Lakeland at Watson Clinic. I wish you well and if you need any help on anything dont hesutate to ask. I love the title by the way.Tracy
my 22 year oold cousin died recently from his cvid complications, Yes I am sad for this loss but I am also confused, Why him and not me. This bit bybit dyiing, tumors being removed spinal surgeries, nasal procedures, and all the drugs,,,, enough is snough I wish I had the balls to end this horrific life,
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