Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Hi Helen, I am so sorry you have been diagnosed with IgAN. You have found a group though that is very supportive and incredibly encouraging. We do welcome you into our midst. As I recommended to Mike, please do take a look at www.igan.ca and that would be an excellent place to learn about IgAN. As far as allergies, the immune complex that is involved in allergic reaction is actually IgE, not IgA. This may help from WebMD: IgA. IgA antibodies are found mainly in areas of the body such the nose, breathing passages, digestive tract, ears, eyes, and vagina. IgA antibodies protect body surfaces that are exposed to the outside from foreign organisms and substances. This type of antibody is also found in saliva and tears. About 10% to 15% of the antibodies usually present in the body are IgA antibodies. A small percentage of people do not make IgA antibodies IgE. IgE antibodies are found in the lungs, skin, and mucous membranes. They help protect the body against foreign substances such as pollen, fungus spores, and animal dander. IgE antibody levels are often high in people with allergies. Also remember that as I just told Mike, only from 30-50% of cases of IgAN progress to End Stage Renal Disease. There are many of us here who have had IgAN for over 20 years and are still holding out on dialysis or transplant. I know it is hard to feel like the future is uncertain especially since you have two little ones, but try to not let IgAN dictate your life. Live each day to the fullest extent possible and count every day as a blessing. We are here for you to support you all the way! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Hi Helen... Sorry to hear about your recent discovery.Try not to get to alarmed! I have had Igan for 28 years and am still not on dialysis. Don't let it take control of you.There are plenty of us to write to. We are all in this together. Merry Christmas > Hi - I'm Helen, I'm 28 and was told a week ago that I probably have > IgA Nephropathy, although the biopsy is not until the spring. So far > the symptoms are just blood and protein - my blood pressure is fine, > and I feel OK, which is part of why this has been such a hard thing > to accept. I have 2 children, aged 4 and 2, so this has hit me hard, > but I'm trying to stay positive. The consultant even told me this > can go away on it's own, but perhaps that's too much to hope for..? > > I have been doing a lot of research into this over the last week, a > lot of which has scared me senseless, but I did discover that there > appears to be a link between autoimmune diseases such as this, and > allergies. I have had a marked increase in the amount of things I > have become intolerant to since the symptoms began a couple of years > ago. I have always suffered from allergic rhinitis, but now I can't > eat fresh fruit or nuts, and I seem to react to everything. I read > that the IgA antibody is the one that attacks foreign things in the > system, and a lot of what allergies are is the body deciding to > attack something it perceives as bad. In this disease, it's the > kidneys. > > I have read this theory, and I would love to hear from people about > it, that the reason we suffer from autoimmune diseases and allergies > is because we dont have parasites for the body to attack so it > attacks harmless things instead. Research into using gut worms in > people with ulcerative colitis and crohns disease as well as people > with allergies has shown amazing results. Does anyone else know > anything about this? I've not heard it related to this particular > disease, but surely there's a possibility. > > Anyway, I look forward to hearing from others in this group. I'm > having a really hard time getting my head around all this and would > welcome your messages. > > Helen. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 Hi Helen, I'm sorry to hear about your diagnosis but know there is hope, even when it looks hopeless. This group here is a lifesaver for starters. I was diagnosed in Sept, I'm 34 with 2 young kids ages 6yrs and 9yrs....and I know what you mean about the fear factor of it all. My disease is fairly progressed as seen by biopsy, I have all the factors that can possibly lead to ESRD ....BUT like others have said it's not 100% for sure that I'll end up there. Right after diagnosis I would put my kids to bed and sit and cry for hours. Then I'd get on here, read thru the e.mails, and find that many of my fears were being amplified by my lack of knowledge of this disease. It takes some time but after a few months you'll find you'll get your head around it and take each day as it comes. Learning you have a chronic illness is hard, you will go thru the grief process and that is normal, let it come. I'm also finding that each day is different, some days I have all the energy in the world, others I need a nap (or two) bad. The few months right after diagnosis when they were trying to figure out medications and dosages were the worst. Reactions to medications and the constant adjusting of dosages can really set your body out of whack, and with it your mental state. Just remember to take care of yourself. Keep in your head that once you have learnt more about the disease, it's progression, and it's nuances, once your medications have been figured out, and once you have lived with it for a bit that it WILL get easier. I've noticed the same type of problem you describe with regards to becoming more intolerant to things as time passes. I went in for allergy testing and they found nothing significant, however there are so many more foods that I just can't handle eating any longer. Food dyes cause my b/p to rise, cinnamon and oregano make me feel ill, peppers make me feel horrid, and the list is growing. The allergist didn't have any explanation for it and neither has my nephthrologist. My personal theory is that perhaps I had a tendency toward being sensitive to these things before and now that my body isn't filtering toxins as easily the sensitivities are more pronounced. But like I said that's just my personal outlook on the problem. I just try to avoid those things I know cause problems or eat them in small quantities a few times or less a month. Take care and we're all in the same boat round here. Amy New member alert Hi - I'm Helen, I'm 28 and was told a week ago that I probably have IgA Nephropathy, although the biopsy is not until the spring. So far the symptoms are just blood and protein - my blood pressure is fine, and I feel OK, which is part of why this has been such a hard thing to accept. I have 2 children, aged 4 and 2, so this has hit me hard, but I'm trying to stay positive. The consultant even told me this can go away on it's own, but perhaps that's too much to hope for..? I have been doing a lot of research into this over the last week, a lot of which has scared me senseless, but I did discover that there appears to be a link between autoimmune diseases such as this, and allergies. I have had a marked increase in the amount of things I have become intolerant to since the symptoms began a couple of years ago. I have always suffered from allergic rhinitis, but now I can't eat fresh fruit or nuts, and I seem to react to everything. I read that the IgA antibody is the one that attacks foreign things in the system, and a lot of what allergies are is the body deciding to attack something it perceives as bad. In this disease, it's the kidneys. I have read this theory, and I would love to hear from people about it, that the reason we suffer from autoimmune diseases and allergies is because we dont have parasites for the body to attack so it attacks harmless things instead. Research into using gut worms in people with ulcerative colitis and crohns disease as well as people with allergies has shown amazing results. Does anyone else know anything about this? I've not heard it related to this particular disease, but surely there's a possibility. Anyway, I look forward to hearing from others in this group. I'm having a really hard time getting my head around all this and would welcome your messages. Helen. To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2003 Report Share Posted December 24, 2003 Hello Helen, Sorry to hear you were diagnosed with probable Igan. I have been diagnosed 7 years ago with this disease and haven't had much problems since. Just flare ups when having a cold and flue etc. Right now my protein levels are a little high so maybe I need to start medication, but my neph will decide on that in May. Until now it hasn't been neccesary to take any medication. When you just heard you have this disease it seems really terrible, but there are a lot of worse diseases you can have! It progresses really slow and most of us never get to heavy medication or end stage renal failure. All I would like to say to you is that at first it's a shock to hear this, but after a while you get used to the idea and you will notice that your life doesn't change suddenly and just will go on the way it was before. You can be tired a little more often and feel sicker then before when having a cold etc., but it's all acceptable. Sometimes you will be feeling a little down when the outcome of testresults are not what you expected them to be, but you do get over that too. Just take your time to get over the first shock and read as much as you can, because the more you know the better! Merry Christmas Doortje Quote Link to comment Share on other sites More sharing options...
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