I was diagnosed with CVID in March 2011 my numbers were extremely low 42. I was given IVIG once and thereafter put on SubQ infusions weekly. I feel for all the children and adults that suffer from this. But what you are doing is great. Thank you.
It is estimated that 1 in every 250 individuals suffer hypogammaglobulimia or Immune deficient disease--CVID is estimated at about 1 in 65,000 people. I do feel there are many more out there though
I have read where people are saying CVID is estimated 1 in 25,000-50,000 are affected. Is there a current page/blog/comment page? My sister and niece have both been diagnosed with CVID. Our mother passed away from it (Pneumonia) 9 years ago at age 43 and doctors believe her sister had passed away from it as well at age 19 (approx 28 years ago).
I am writing a report for school about it and arguing that more people should be made aware of what it is as there are still many doctors who don't know what it is. I'm with you -I believe there are more out there than people think with CVID.
No, if you hyve Hyogammaglobulimia is is actually not rare. It is sad that you have this as it hurt and feels the same. However, Hypogammaglobulimia has to do with low IgG's or blood serum "b" cells missing so your immune system cannot fight. Now, CVID means all of your Ig's are missing or low such as IgG, IgA. and IgM. Also CVID not only has the compound of Hypogammaglobulimia but we are also missing a protein in our blood to fight other infections more than just the B cell. Same treatment thou
I have the Hypogammaglobulanemia. I don't really know the difference between this and CVID. I was told it is also called FAID, and is even more rare than CVID. I don't know.
Thanks for putting this on here. I am actually on my daughter's account. She is 13 with CVID. She was diagnosed in 2007 and we found an immunologist by searching the web. We live in a very small town in North Alabama and sadly had waisted an entire year witn an immunologist at Children's Hospital that was thrown into immunology and had no knowledge of what he was suppose to be doing. He has been fired . My IgG count in '08 508 and now 672. I have apt. with daughter's immunologist next month.
Many do this in groups, you have tacked this on your own. What a wonderful amount of strength you show us others who suffer that have no words. You be the voice ,angel and keep up the fight. I see doing it alone gets more attention paid cause i see the video responses. Praise you child of God
I was diagnosed with CVID in March 2011 my numbers were extremely low 42. I was given IVIG once and thereafter put on SubQ infusions weekly. I feel for all the children and adults that suffer from this. But what you are doing is great. Thank you.
Ellie63
GamerPron 2 weeks ago
Thank you so much for educating me. Some Dr.s write Hypogammagobulemia and some write CIVDS for my diagnosis. Now I will pen them down on what it is.
mistynite2000 8 months ago
It is estimated that 1 in every 250 individuals suffer hypogammaglobulimia or Immune deficient disease--CVID is estimated at about 1 in 65,000 people. I do feel there are many more out there though
ingabingaboo 1 year ago
@ingabingaboo
I have read where people are saying CVID is estimated 1 in 25,000-50,000 are affected. Is there a current page/blog/comment page? My sister and niece have both been diagnosed with CVID. Our mother passed away from it (Pneumonia) 9 years ago at age 43 and doctors believe her sister had passed away from it as well at age 19 (approx 28 years ago).
MamaFox79 3 months ago
I am writing a report for school about it and arguing that more people should be made aware of what it is as there are still many doctors who don't know what it is. I'm with you -I believe there are more out there than people think with CVID.
MamaFox79 3 months ago
No, if you hyve Hyogammaglobulimia is is actually not rare. It is sad that you have this as it hurt and feels the same. However, Hypogammaglobulimia has to do with low IgG's or blood serum "b" cells missing so your immune system cannot fight. Now, CVID means all of your Ig's are missing or low such as IgG, IgA. and IgM. Also CVID not only has the compound of Hypogammaglobulimia but we are also missing a protein in our blood to fight other infections more than just the B cell. Same treatment thou
ingabingaboo 1 year ago
I have the Hypogammaglobulanemia. I don't really know the difference between this and CVID. I was told it is also called FAID, and is even more rare than CVID. I don't know.
dragonflyice 1 year ago
Thanks for putting this on here. I am actually on my daughter's account. She is 13 with CVID. She was diagnosed in 2007 and we found an immunologist by searching the web. We live in a very small town in North Alabama and sadly had waisted an entire year witn an immunologist at Children's Hospital that was thrown into immunology and had no knowledge of what he was suppose to be doing. He has been fired . My IgG count in '08 508 and now 672. I have apt. with daughter's immunologist next month.
EinaudiRulez 1 year ago
you have ,moved mountains dear child.
Many do this in groups, you have tacked this on your own. What a wonderful amount of strength you show us others who suffer that have no words. You be the voice ,angel and keep up the fight. I see doing it alone gets more attention paid cause i see the video responses. Praise you child of God
sickladyfine 2 years ago
the page is called "mychildisalwayssick/myspace" wonderful page!
ingabingaboo 3 years ago
Very well explained....thank you for all your hard work! What page are you talking about? I would like to know please :)
icsomethingshiny 3 years ago