Hi Im New to the Group

February 27, 2005

Welcome to the group, Sandy.

I don't have statistics on hand at the moment, but, it sure doesn't seem to

be that rare for women to get IgAN, judging by the number of you in this

group. You seem to outnumber us guys :-)

I think you will find that the vast majority of people with IgAN do NOT have

a family history of it. I sure don't, and only a few among the 1500 members

here seem to have one. The genetic thing is different than it is with truly

hereditary kidneys diseases like PKD, for example, where parent, brothers,

sisters, cousins, etc. of the same family are all or have been on dialysis.

This is pretty rare with IgAN. A genetic component has been identified by

researchers, but IgAN does not seem to be hereditary on the basis of that

gene alone.

Have you had a look at my website, www.igan.ca ?

Pierre

hi Im new to the group

>

> hello to everyone ,, Im new to the group,, I was dx with IgAn in 2001.

> I read on this on the internet about IgAn and wondered if you had any

> thoughts on it,,

>

> Who gets it?

> In the United States, Canada, and the United Kingdom, IgA nephropathy

> accounts for 2-10% of glomerular kidney diseases, but in Japan, it

> accounts for 18-40%. It often begins in older children or young

> adults in their 20s and 30s. The disease occurs more often in males,

> and is rare in blacks. It seems to run in families, which suggests

> that genetics play a part in who develops it.

>

> my question is , is it rare for females to get it? I'm female and

> from the Us,,and was dx with it in my 40's.. and dont know of a

> family history of it,, so I'm confused a bit,,

> thanks so much Sandy

>

February 27, 2005

Welcome Sandy.

Family history is not a huge factor in IgAN. No one else in my family has it,

and my sister was able to donate her kidney to me (we're both fine). Some people

think there is an environmental link, others genetics, others think it's an

autoimmune disease. Me? I think we're just the lucky ones....;-).

Anyway, it is very prevalent in Japan, and a lot of research happens there. I

had heard the same one about France (never able to find it again). As for the

guys vs. the girls, you seem to have the edge in this group.

Sandy Flowers wrote:

hello to everyone ,, Im new to the group,, I was dx with IgAn in 2001.

I read on this on the internet about IgAn and wondered if you had any

thoughts on it,,

Who gets it?

In the United States, Canada, and the United Kingdom, IgA nephropathy

accounts for 2-10% of glomerular kidney diseases, but in Japan, it

accounts for 18-40%. It often begins in older children or young

adults in their 20s and 30s. The disease occurs more often in males,

and is rare in blacks. It seems to run in families, which suggests

that genetics play a part in who develops it.

my question is , is it rare for females to get it? I'm female and

from the Us,,and was dx with it in my 40's.. and dont know of a

family history of it,, so I'm confused a bit,,

thanks so much Sandy

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

February 27, 2005

Hi Sandy,

" Who gets it? " seems to be a most popular question.... right after " Why

me? " . Making sense of epidemiological data isn't as easy as it seems.

Japan (unlike the other countries mentioned) does routine urinalysis in the

schools - much the same way they do vision screening in the US. Whether

there really is a higher incidence of IgAN in Japan - or whether it's just

diagnosed better remains a subject of debate. A companion question is why

do Japanese researchers consistently report better treatment for glomerular

disease is general? Does this reflect a less agressive variant of the

disease in a largely homogeneous population or are we looking at a cultural

bias against reporting negative results? Once again, I don't have an

answer.

Many folks with IgAN (and other similar immunologically mediated disorders)

don't have a familial history of kidney disease. However, many seem to have

a somewhat higher than usual incidence of other autoimmune disorders. For

example, the literature reports an association between celiac disease and

IgAN (also MPGN). Many folks here have family members with other immune

disorders. Everything I've read suggests a genetic predisposition. As

far as I know, IgAN is found equally in men and women - which would rule out

a sex-linked gene.

Welcome to the email list!

Cy

hi Im new to the group

>

> hello to everyone ,, Im new to the group,, I was dx with IgAn in 2001.

> I read on this on the internet about IgAn and wondered if you had any

> thoughts on it,,

>

> Who gets it?

> In the United States, Canada, and the United Kingdom, IgA nephropathy

> accounts for 2-10% of glomerular kidney diseases, but in Japan, it

> accounts for 18-40%. It often begins in older children or young

> adults in their 20s and 30s. The disease occurs more often in males,

> and is rare in blacks. It seems to run in families, which suggests

> that genetics play a part in who develops it.

>

> my question is , is it rare for females to get it? I'm female and

> from the Us,,and was dx with it in my 40's.. and dont know of a

> family history of it,, so I'm confused a bit,,

> thanks so much Sandy

>

> 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

>

February 27, 2005

thanks Pierre

I was starting to worry there for a minute,, when my doc told me it

was predominately a male disease I really felt really weird about

what he said,,

I have another question

Do many of the females with IgAn have Rh negative blood or have had

rhogam shots,, I have often wondered if that could bring it on,,

thanks so much

Sandy

> Welcome to the group, Sandy.

>

> I don't have statistics on hand at the moment, but, it sure doesn't

seem to

> be that rare for women to get IgAN, judging by the number of you in

this

> group. You seem to outnumber us guys :-)

>

> I think you will find that the vast majority of people with IgAN do

NOT have

> a family history of it. I sure don't, and only a few among the 1500

members

> here seem to have one. The genetic thing is different than it is

with truly

> hereditary kidneys diseases like PKD, for example, where parent,

brothers,

> sisters, cousins, etc. of the same family are all or have been on

dialysis.

> This is pretty rare with IgAN. A genetic component has been

identified by

> researchers, but IgAN does not seem to be hereditary on the basis

of that

> gene alone.

>

> Have you had a look at my website, www.igan.ca ?

>

> Pierre

>

> hi Im new to the group

>

> >

> > hello to everyone ,, Im new to the group,, I was dx with IgAn in

2001.

> > I read on this on the internet about IgAn and wondered if you had

any

> > thoughts on it,,

> >

> > Who gets it?

> > In the United States, Canada, and the United Kingdom, IgA

nephropathy

> > accounts for 2-10% of glomerular kidney diseases, but in Japan, it

> > accounts for 18-40%. It often begins in older children or young

> > adults in their 20s and 30s. The disease occurs more often in

males,

> > and is rare in blacks. It seems to run in families, which suggests

> > that genetics play a part in who develops it.

> >

> > my question is , is it rare for females to get it? I'm female and

> > from the Us,,and was dx with it in my 40's.. and dont know of a

> > family history of it,, so I'm confused a bit,,

> > thanks so much Sandy

> >

February 27, 2005

thanks Cy

great input,, I also have Fibromyalgia, which is determined to be

autoimmune by some researchers.

thanks Sandy

> Hi Sandy,

>

> " Who gets it? " seems to be a most popular question.... right

after " Why

> me? " . Making sense of epidemiological data isn't as easy as it

seems.

> Japan (unlike the other countries mentioned) does routine

urinalysis in the

> schools - much the same way they do vision screening in the US.

Whether

> there really is a higher incidence of IgAN in Japan - or whether

it's just

> diagnosed better remains a subject of debate. A companion question

is why

> do Japanese researchers consistently report better treatment for

glomerular

> disease is general? Does this reflect a less agressive variant of

the

> disease in a largely homogeneous population or are we looking at a

cultural

> bias against reporting negative results? Once again, I don't have

an

> answer.

>

> Many folks with IgAN (and other similar immunologically mediated

disorders)

> don't have a familial history of kidney disease. However, many

seem to have

> a somewhat higher than usual incidence of other autoimmune

disorders. For

> example, the literature reports an association between celiac

disease and

> IgAN (also MPGN). Many folks here have family members with other

immune

> disorders. Everything I've read suggests a genetic

predisposition. As

> far as I know, IgAN is found equally in men and women - which would

rule out

> a sex-linked gene.

>

> Welcome to the email list!

>

> Cy

> hi Im new to the group

>

> >

> > hello to everyone ,, Im new to the group,, I was dx with IgAn in

2001.

> > I read on this on the internet about IgAn and wondered if you had

any

> > thoughts on it,,

> >

> > Who gets it?

> > In the United States, Canada, and the United Kingdom, IgA

nephropathy

> > accounts for 2-10% of glomerular kidney diseases, but in Japan, it

> > accounts for 18-40%. It often begins in older children or young

> > adults in their 20s and 30s. The disease occurs more often in

males,

> > and is rare in blacks. It seems to run in families, which suggests

> > that genetics play a part in who develops it.

> >

> > my question is , is it rare for females to get it? I'm female and

> > from the Us,,and was dx with it in my 40's.. and dont know of a

> > family history of it,, so I'm confused a bit,,

> > thanks so much Sandy

> >

> > 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

> >

February 28, 2005

Statistically, they do say that more male get it than females, by a ratio of

at least 2 to 1, maybe more. Sorry you had to be in that " 1 " group. They

also say that IgAN is less prevalent in Canada and the U.S., but that didn't

stop me from getting it in Canada. Luck of the draw, I guess. I don't know

how much stock I would put in that 2 to 1 ratio though. IgAN is very

diverse, and it may affect different ethnic populations in different ways.

For all we know, there is so much variability surrounding how IgAN behaves

that we may even be looking at different diseases that have the same result.

I don't know about Rh factor or the Rhogam. I recall someone a while back on

a predecessor group to this one did try out the idea that IgAN is more

common among A blood types though. I happen to be blood type A pos, but I've

never seen any evidence about prevalence by blood type nor by Rh factor.

It's always interesting when someone new comes aboard. We always revisit the

search for an original cause :-)

ly, Sandy, I looked for years and years, and I never found a common

thread. I do hope someone finds it someday though. We can speculate about

what might bring IgAN on, but we just don't know at present. Allergies,

vaccinations, food intolerances are the common ones we always think about. I

have allergies, and who hasn't had vaccinations, but the incredibly vast

majority of people who have had both don't have IgAN. So, it remains a

mystery.

After a while, my philosophy became that whatever the original cause, I

could only deal with my chronic renal failure in the present, and I can't

know more than the best medical and scientific research knows.

Pierre

Re: hi Im new to the group

>

> thanks Pierre

> I was starting to worry there for a minute,, when my doc told me it

> was predominately a male disease I really felt really weird about

> what he said,,

> I have another question

> Do many of the females with IgAn have Rh negative blood or have had

> rhogam shots,, I have often wondered if that could bring it on,,

> thanks so much

> Sandy

>

February 28, 2005

Hi Sandy,

A very warm welcome to you! Sorry you had a reason to find your way here.

Although IgAN is more prevalent in males, it also occurs in females, although at

a lower rate of frequency than in men.

It is not uncommon to have IgAN for years in a very mild form before it is

diagnosed later in life. Here in the US, it is not routinely screened for as it

is in Japan, which in my opinion is likely the reason it is reported to be more

prevalent in Japan. I think they are just more aware of it.

Welcome again and feel free to jump in with any quesions.

In a message dated 2/27/2005 5:13:42 PM Eastern Standard Time, " Sandy Flowers "

writes:

>

>hello to everyone ,, Im new to the group,, I was dx with IgAn in 2001.

>I read on this on the internet about IgAn and wondered if you had any

>thoughts on it,,

>

>Who gets it?

>In the United States, Canada, and the United Kingdom, IgA nephropathy

>accounts for 2-10% of glomerular kidney diseases, but in Japan, it

>accounts for 18-40%. It often begins in older children or young

>adults in their 20s and 30s. The disease occurs more often in males,

>and is rare in blacks. It seems to run in families, which suggests

>that genetics play a part in who develops it.

>

>my question is , is it rare for females to get it? I'm female and

>from the Us,,and was dx with it in my 40's.. and dont know of a

>family history of it,, so I'm confused a bit,,

>thanks so much Sandy

>

>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

>

October 6, 2006

I am posting here to not only help others if I can but to find some for

myself. I have not been able to find many women that have had the same

treatment.

I was diagnosed with Stage 3 breast cancer in 1996 on my birthday. I

did 6 rounds of chemo before surgery, double mastectomy with a rdical

on the left. It was Invasive lobular carcinoma. I then had 33 rounds

of radiation. I worked through all of this. In 98 My oncologist

suggested that I have a stem cell transplant with high dose chemo to

minimize the risk of the cancer returning. I made it through this

procedure but nothing has breen the same since. I have not been able

to return to work. The high dose chemo burnt out my bone marrow and

have needed trasfusions for 2 years after. I havent since then but I

am myelodysplasic, highly amemic, procrit hasnt helped, a metastesis in

the skull which has a lacy pattern, a lesion under my left arm biopsied

and excised with possible results of angiosarcoma (I was told that MD

would not make a call on it because of the close margins and

legal matters) extreme fatigue, bone pain, nodules in right lung,

abnormal density on left hip, a dentist just recently found an abnormal

mass in my jaw and did surgery and lymphodema. The list just goes on

and on.

I would like to know if there is anyone out there that has experienced

the same thing or anything close. Any advice? I fell my doctors are

no longer working for me because they simply dont understand the

phenomona themselves. I haven't been able to find much research on

research stem cell patients so anything would be appreciated.

God Bless to all and your families.

Deana

October 7, 2006

Deana,

I have not had this problem but will keep you in my prayers. We have a sister

group that is mostly Stage IV ladies, they have all been through a lot and could

possibly answer some of your questions. Here is the url if you would like to

join them also.

http://health.groups.yahoo.com/group/stageivbreastcancer

Hugs

nne

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