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Postby jadesteva » Mon May 24, 2004 4:43 am

Hello I'm the very scared mom of Shaye.. who is 12
She has MPGN type1. I'm freaking out. Anyone know about this particular disease?
It came as quite a shock. I'm scared to feed her everything seems to be on the excluded list. How can she have a normal life.
The more that I research the more fearful I become.
It has in the three weeks that we have been diagnosed already havoed our lives. I remain calm in her presence but loose it inside.
I'm a single mom of four and that is tearing me up now also as I am isolated and am financially strapped... I lost my job while at the hospital with her. I'm trying to do the best for her but it is trying.
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Re: MPGN1_daughter_12_just_diagnosed_I'm_terrified!!!!

Postby BrendaM » Mon May 24, 2004 8:49 am

I know how you feel believe me, I went through the same 12 months ago when both my children were diagnosed with kidney disease. I can't help about MPG but others here can - and you have reached the best place for understanding, support and practical advice. Life will be hard but others here know and have lived through what you are going through and will help all we can
Best wishes
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Joined: Mon Apr 26, 2004 8:57 am
Location: Cotswolds, UK

MPGN type1 in 12 year old

Postby Cheryl in CT » Tue May 25, 2004 12:25 pm


I know how terrified you must be for Shaye, and my heart goes out to you. Having children of my own, I know how difficult it is to deal with any pain or illness they may have to face.

Sadly, there are many children out there who are dealing with MPGN and other types of renal issues. There is a highly recommended support group called NephKids that has attracted a number of parents who share ideas and information about their own children's renal problems. You'll find it at:

I will also send you a PM with the e-mail address of another single mom to contact. She has lots of experience in dealing with her own son's renal illness, and I'm sure she will be happy to assist in pointing you in the right direction in terms of helping Shaye.

I'm wishing you nothing but the best in dealing with all that life is sending your way right now. There IS hope, and there are places to go for help, so please hang in there. We'll be thinking of you, and we'll be here for support, whenever you need it.

Cheryl in CT
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Location: Connecticut, USA


Postby Art from Ontario » Tue May 25, 2004 8:52 pm

These sites may be of help

Infomation :

Support Group for MPGN patients:

....Keep chin up
Art from Ontario
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Joined: Mon Apr 26, 2004 1:11 am
Location: Niagara, Ontario, Canada

Postby JMan » Wed May 26, 2004 11:22 am

Hi jadesteva...

Just a question..

Which country are you in? In the UK the NKF and its local and young persons groups can put you in touch with others in the same situation. and They also have a HelpLine you can call.

In the US the AAKP serves a similar purpose.

I can't imagine many things much more scary than what you are going through but you need to know there are others out there who are in a similar position to you and can help and support you through this. ... /mpgn.html may also be useful
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
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Location: A small vyllage in Ye Olde London Town, An IÆ’land, Planet Earth, The Universe


Postby kim » Wed May 26, 2004 1:43 pm

I have had MPGN III for eight years now. I have led a very normal life and although it is very scary at times, feel blessed to have had such a long time without dialysis or anything yet. I know it must be soo difficult to have it happen to your child. This board is wonderful and supportive!!! And everyone is soo willing to answer any questions they may be able to help you with. There are several of us here with MPGN, so feel free to ask any questions. Feel free to send private messages any time you wish. Take care of yourself!!!
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Postby jadesteva » Fri May 28, 2004 6:38 am

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Joined: Mon May 24, 2004 4:33 am

Jadesteva- best wishes to you ;)

Postby Elaine » Fri May 28, 2004 9:32 pm

Hello read u post. So sorry to hear your news about u daughter. I too have a 16 year old daughter who has kidney disease and has been on peritoneal dialyis for 17 mnths nearly :roll: Life can be tough such a rollercoaster. She has been in hospital 5 x in last 5 mnths came out yesterday after 1 week with infection/ peritonitis. Life can be really tough but you take each day as it comes and learn to be flexible as required.
As others' have said there are many supportive groups to assist you and your family like this board & CHAT etc.

I wish u all the very best and there are alotta people in simailr situations as uself who may be able to advise/ support you. :wink:

take care best wishes Elaine ;) :wink: :P
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Location: south west

Postby michelle999 » Sun May 30, 2004 11:46 pm


Sorry to hear about your bad news. I thought you might like to hear my story, and it might help give you some light at the end of the tunnel.

I was diagnosed with MPGN about 4 yrs ago, I still don't know what type. I was losing massive amounts of protein, and was very swollen. Anyway, the Dr's gave me steriods, and the disease went into remisson.

I had a relapse about a year ago, but the disease went into spontaneous remission after about 3 months. To date, I have normal kidney function, my blood tests are good and I just go back for check ups about every 6-12 months.

I hope this helps you. MPGN does not always have to be a truly dreadful thing.

Best wishes,

Posts: 11
Joined: Sun May 30, 2004 11:36 pm

To Steva

Postby lynne smith » Wed Aug 04, 2004 7:59 pm

Hi Steva and other members with MPGN,

I have identical twin daughters- one with MPGN 2. We have lived with MPGN for 12 years, and have met quite a few people with all the types.

The Uni. of Iowa is doing an MPGN database survey trying to find some information that will eventually help fill in the many unknowns about the disease, its course, effective treatments and hopefully a route to a cure. I would encourage you to take a look at the site and consider participating. It's one way to help understand this disease.

We are running the first round of statistics this month, and some interesting data is coming out. The more people we can get the better the information reliability.

Even with MPGN 2 there are many who have remained stable for many years. There will be an MPGN 2 research conference next week. The NIH is having a conference to address GNs next year. Things are starting to move forward--in that is hope.
Contact me if you want to talk,
lynne smith
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Joined: Wed Aug 04, 2004 7:35 pm

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