Re: I'm new here

[Guest guest]

Hi CWAELTY,

A very warm welcome to the group to you and your daughter. I was younger

than your daughter when I first had symptoms of IgAN and HSP. That was over 30

years ago and I am still not yet on dialysis. I hope she can stay stable

for decades to come too.

I married, raised two daughters, worked full time, was very active in my

church, lead and participated Bible Studies and up to the past month or so ran

3-4 miles four days a week. I am currently at 18% function, and having some

problems but not really until the past couple of years. I hope that is of

some encouragement to you.

Welcome again!

In a message dated 3/27/2005 8:00:46 A.M. Pacific Standard Time,

cwaelty@... writes:

Hello everyone, Happy Easter

My daughter was just diagnosed with HSP / IGA Nephropathy, 16 years

old, other wise a very healthy vibrant young girl. My heart is

breaking and I now need to find out as much information on IGAN as

soon as possible. We are dealing with Childrens Hospital in Boston

and s Hopkins in Baltimore land. Any help and info would be

greatly appreciated.

Thank you

[Guest guest]

Hi Cathy,

Welcome to the email list. As always, I'm sorry you have reason to be here,

but glad you found us. My 14 year old son was diagnosed with MPGN two and a

half years ago. Back then, everyone kept telling me it would get easier. I

thought they were crazy. It turned out they were right.

It sounds like you've got some high powered docs involved, which can be very

reassuring. This is the time you and your daughter want to be learning as

much as possible. Despite a background in biochem, I managed to reach my

mid-40's without knowing ANYTHING about the kidneys. Reading other folks'

posts was a bit unnerving at first, as they all seemed to involve tediously

long lists of meds and various symptoms I didn't want to consider.

I agree with all the points Betsy made. I'd also add that in a funny way,

the diagnosis hasn't changed all that much in our lives (although I wouldn't

have said that two years ago!) - and it hasn't really changed my

expectations for my son all that much. I hope it will be the same for you

and yiour daughter.

Cy

> I'm new here

>

>

> >

> >

> > Hello everyone, Happy Easter

> > My daughter was just diagnosed with HSP / IGA Nephropathy, 16 years

> > old, other wise a very healthy vibrant young girl. My heart is

> > breaking and I now need to find out as much information on IGAN as

> > soon as possible. We are dealing with Childrens Hospital in Boston

> > and s Hopkins in Baltimore land. Any help and info would be

> > greatly appreciated.

> > Thank you

> >

> >

>

>

>

>

>

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