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Re: recently diagnosed with iga (Rajeev)

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Hi Rajeev,

Welcome to our group. I am very sorry you have been diagnosed with IgAN, but

this is certainly the place to come for support.

One thing I can suggest is going to our sister site, www.igan.ca which our

founder, Pierre put up.  This site has so much information, and he has presented

it from a patient's perspective so you can learn lots there.  Also, feel free

to ask questions along the way.

I think that will help to get you at least familiar with your disease, and

that will help to take some of the fear out of it for you. I do understand how

overwhelming it is at first. Pierre wrote earlier today in an email that it

is like learning to drive a car. At first, it seems like there is so much to

remember and keep track of, but soon, you are speeding down the expressway and

it is all second nature. I love that analogy because it really is true. It

takes some getting used to, but certainly you can live a very full long life.

IgAN is not a fatal disease.

By way of encouragement, only somewhere between 30-50% of people with IgAN

progress to end stage renal disease, so the majority of the time it is a fairly

benign condition, and even for those who do progress, there is dialysis and

transplants. We have had several members who have had successful transplants

just this month, and a number of members who are doing very well on dialysis

too.

Do you happen to know your creatinine clearance level or your serum

creatinine level? Those are the two lab values we most use to track the

progression of

IgAN. As far as how fast it progresses, that differs for each of us. I have

had symptoms over 25 years and I am not yet on dialysis, although I am edging

closer the last couple of years. Still, I keep very active and run four days

a week for three miles, work full-time, and manage my household.

As far as lifestyle changes, it is important to consult with your doctor on

dietary restrictions, if there are any. This must be highly customized

according to your particular lab values. Ace inhibitors are known to have a

renal

protective measure, so it is good you are on the Lisinopril. Many think fish

oil helps too.

It is important to listen to your body, and slow down when you get tired, but

other than that, live each day to the fullest extent possible.

Welcome again, and let us know how we can support you!

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