Hereditary hemochromatosis

[Guest guest]

Hey y'all,

Question that someone may know the answer to.

Hereditary hemochromatosis runs in my family. My dad has it, my

brother, my grandfather died of complications of hemochromatosis. My

son Liam has never been tested for it, though I have asked doctors

before Liam's issues were discovered if it should be.. and none ever

did want to test for it. He has never been given supplements with

iron, due to the disorder running rampant in my family.

So Liam was getting genetic testing a couple months ago and a test

listed on there was hereditary hemochromatosis but Liam wasn't tested

for that. Anyway.. just made me wonder if this could be a component of

his issues and so I was wondering if he should be tested ?

Thanks,

Annie

[Guest guest]

My husband was diagnosed with hemochromatosis, but neither one of

his

parents know which side of the family it came from and when the

hemotologist told us it could be dormant a generation, we thought

testing would be beneficial just for family history.

It is more important for males to be tested since girls usually

bleed

once a month well into their 40s and release the high iron from

their

blood that way. Treatment is phlebotomy. The excess iron

can travel and leave excess deposits in main organs such as the

liver,

kidney, heart, pancreas. If not treated, hemochromatosis would

develop into such diseases as psoriasis of the liver, diabetes, and

heart disease. Most patients have a internal heating system and

tend

to wear less clothing during the cold months. Their hands and feets

tend to be warmer, thus they can walk around in shorts all winter

long. Most patients are from Irish decent and come from the

European countries surrounding Hungary.

My hemotologist did suggest testing for all my kids for peace of

mind. He did not relate the apraxia or motor planning disorders

with

the hemochromatosis but there is ongoing research. I am happy the

blood banks are finally accepting their blood and we no longer have

to

pay for the treatment.

All the best,

Joanne

[Guest guest]

Joanne,

My signinficant other has diverticulitis and often has blood in his stool. He

IS from Irish descent. I am chronically getting after him to lay off the

gluten/casien!

When you speak of bleeding, what kind of bleeding?

Janice

[sPAM] [ ] Re: Hereditary hemochromatosis

My husband was diagnosed with hemochromatosis, but neither one of

his

parents know which side of the family it came from and when the

hemotologist told us it could be dormant a generation, we thought

testing would be beneficial just for family history.

It is more important for males to be tested since girls usually

bleed

once a month well into their 40s and release the high iron from

their

blood that way. Treatment is phlebotomy. The excess iron

can travel and leave excess deposits in main organs such as the

liver,

kidney, heart, pancreas. If not treated, hemochromatosis would

develop into such diseases as psoriasis of the liver, diabetes, and

heart disease. Most patients have a internal heating system and

tend

to wear less clothing during the cold months. Their hands and feets

tend to be warmer, thus they can walk around in shorts all winter

long. Most patients are from Irish decent and come from the

European countries surrounding Hungary.

My hemotologist did suggest testing for all my kids for peace of

mind. He did not relate the apraxia or motor planning disorders

with

the hemochromatosis but there is ongoing research. I am happy the

blood banks are finally accepting their blood and we no longer have

to

pay for the treatment.

All the best,

Joanne

[Guest guest]

Janice,

The treatment for anyone diagnosed with hemochromatosis is to phlebotomize

if not every week, once a month depending on your doctor's orders. You do

need a prescription and in our case the blood bank keeps records and

measures his iron levels and report it to the doctor. A male with iron

levels at 13 and above with the HH diagnosis needs to bring his iron levels

below 11 as per doctors orders. Any normal male with this level is ok. My

husband sees his hematologist every 6 months and receives a new prescription

for phlebotomy each time. He was diagnosed back in 1994 when for his 35th

birthday I scheduled him for a physical exam with an internist who left no

stone unturned . . . little did I know we would find something. He had

complained of major stomach cramps and his iron level was at 19. This was

the best present I have given my husband, even though he did not think so at

the time. He hates doctors! In hindsight, this physical exam added more

years to his life and there were no signs of damage to any of his vital

organs. In order to diagnose, see a hematologist and ask for the specific

test for Hemochromatosis.

The females in our family (my daughters) were not priority for testing

because the hematologist told us they were releasing the high iron during

menses. They may develop problems during premenopause and needed to let

their doctors know hemochromatosis is in their family history on their

father's side of the family. In the meantime, it is imperative for the

males to be tested and receive treatment asap if testing positive for the HH

gene. I believe my daughters will be tested soon. They are close to their

20s and knowing for sure if they have HH will put their mind at ease and

they will be able to speak to their doctors about a plan. The HH society

has done a lot of research and in 10 years more information will be

available to the public regarding this genetic disorder.

Hope I answered your question Janice. If not email me privately at

mulholland34@...

All the best,

Joanne

P.S. A pint of blood is removed each time my husband visits the blood bank.

_____

From:

[mailto: ] On Behalf Of Janice

Sent: Thursday, September 27, 2007 10:26 AM

Subject: Re: [ ] Re: Hereditary hemochromatosis

Joanne,

My signinficant other has diverticulitis and often has blood in his stool.

He IS from Irish descent. I am chronically getting after him to lay off the

gluten/casien!

When you speak of bleeding, what kind of bleeding?

Janice

[sPAM] [ ] Re: Hereditary hemochromatosis

My husband was diagnosed with hemochromatosis, but neither one of

his

parents know which side of the family it came from and when the

hemotologist told us it could be dormant a generation, we thought

testing would be beneficial just for family history.

It is more important for males to be tested since girls usually

bleed

once a month well into their 40s and release the high iron from

their

blood that way. Treatment is phlebotomy. The excess iron

can travel and leave excess deposits in main organs such as the

liver,

kidney, heart, pancreas. If not treated, hemochromatosis would

develop into such diseases as psoriasis of the liver, diabetes, and

heart disease. Most patients have a internal heating system and

tend

to wear less clothing during the cold months. Their hands and feets

tend to be warmer, thus they can walk around in shorts all winter

long. Most patients are from Irish decent and come from the

European countries surrounding Hungary.

My hemotologist did suggest testing for all my kids for peace of

mind. He did not relate the apraxia or motor planning disorders

with

the hemochromatosis but there is ongoing research. I am happy the

blood banks are finally accepting their blood and we no longer have

to

pay for the treatment.

All the best,

Joanne

[Guest guest]

Thanks Joanne,

He is very 'dark' Irish (dark hair, green eyes, etc.) and has been fighting with

chronic hypertension for the last few years. He just started meds for

chlorestoral as well. His dad has suffered multiple strokes and has battled

heart disease ie. congestive heart issues for the last 20 years. This is a 100%

irish family, through and through.

He is my 'rock' and though we don't live together, he has moved down the street.

One day, when the children are grown, we will do the 'official' thing but he is

Mark's second dad and I need to take care of him!

I appreciate the info. so much and will try to convince him to be tested.....

(no signs of ED as of yet, thank goodness!) I'm sure all I have to mention is

this possibility and he will literally RACE to the internist!

Janice

[sPAM] [ ] Re: Hereditary hemochromatosis

My husband was diagnosed with hemochromatosis, but neither one of

his

parents know which side of the family it came from and when the

hemotologist told us it could be dormant a generation, we thought

testing would be beneficial just for family history.

It is more important for males to be tested since girls usually

bleed

once a month well into their 40s and release the high iron from

their

blood that way. Treatment is phlebotomy. The excess iron

can travel and leave excess deposits in main organs such as the

liver,

kidney, heart, pancreas. If not treated, hemochromatosis would

develop into such diseases as psoriasis of the liver, diabetes, and

heart disease. Most patients have a internal heating system and

tend

to wear less clothing during the cold months. Their hands and feets

tend to be warmer, thus they can walk around in shorts all winter

long. Most patients are from Irish decent and come from the

European countries surrounding Hungary.

My hemotologist did suggest testing for all my kids for peace of

mind. He did not relate the apraxia or motor planning disorders

with

the hemochromatosis but there is ongoing research. I am happy the

blood banks are finally accepting their blood and we no longer have

to

pay for the treatment.

All the best,

Joanne

[Guest guest]

Thanks Joanne,

He is very 'dark' Irish (dark hair, green eyes, etc.) and has been fighting with

chronic hypertension for the last few years. He just started meds for

chlorestoral as well. His dad has suffered multiple strokes and has battled

heart disease ie. congestive heart issues for the last 20 years. This is a 100%

irish family, through and through.

He is my 'rock' and though we don't live together, he has moved down the street.

One day, when the children are grown, we will do the 'official' thing but he is

Mark's second dad and I need to take care of him!

I appreciate the info. so much and will try to convince him to be tested.....

(no signs of ED as of yet, thank goodness!) I'm sure all I have to mention is

this possibility and he will literally RACE to the internist!

Janice

[sPAM] [ ] Re: Hereditary hemochromatosis

My husband was diagnosed with hemochromatosis, but neither one of

his

parents know which side of the family it came from and when the

hemotologist told us it could be dormant a generation, we thought

testing would be beneficial just for family history.

It is more important for males to be tested since girls usually

bleed

once a month well into their 40s and release the high iron from

their

blood that way. Treatment is phlebotomy. The excess iron

can travel and leave excess deposits in main organs such as the

liver,

kidney, heart, pancreas. If not treated, hemochromatosis would

develop into such diseases as psoriasis of the liver, diabetes, and

heart disease. Most patients have a internal heating system and

tend

to wear less clothing during the cold months. Their hands and feets

tend to be warmer, thus they can walk around in shorts all winter

long. Most patients are from Irish decent and come from the

European countries surrounding Hungary.

My hemotologist did suggest testing for all my kids for peace of

mind. He did not relate the apraxia or motor planning disorders

with

the hemochromatosis but there is ongoing research. I am happy the

blood banks are finally accepting their blood and we no longer have

to

pay for the treatment.

All the best,

Joanne

[Guest guest]

Thanks Joanne,

He is very 'dark' Irish (dark hair, green eyes, etc.) and has been fighting with

chronic hypertension for the last few years. He just started meds for

chlorestoral as well. His dad has suffered multiple strokes and has battled

heart disease ie. congestive heart issues for the last 20 years. This is a 100%

irish family, through and through.

He is my 'rock' and though we don't live together, he has moved down the street.

One day, when the children are grown, we will do the 'official' thing but he is

Mark's second dad and I need to take care of him!

I appreciate the info. so much and will try to convince him to be tested.....

(no signs of ED as of yet, thank goodness!) I'm sure all I have to mention is

this possibility and he will literally RACE to the internist!

Janice

[sPAM] [ ] Re: Hereditary hemochromatosis

My husband was diagnosed with hemochromatosis, but neither one of

his

parents know which side of the family it came from and when the

hemotologist told us it could be dormant a generation, we thought

testing would be beneficial just for family history.

It is more important for males to be tested since girls usually

bleed

once a month well into their 40s and release the high iron from

their

blood that way. Treatment is phlebotomy. The excess iron

can travel and leave excess deposits in main organs such as the

liver,

kidney, heart, pancreas. If not treated, hemochromatosis would

develop into such diseases as psoriasis of the liver, diabetes, and

heart disease. Most patients have a internal heating system and

tend

to wear less clothing during the cold months. Their hands and feets

tend to be warmer, thus they can walk around in shorts all winter

long. Most patients are from Irish decent and come from the

European countries surrounding Hungary.

My hemotologist did suggest testing for all my kids for peace of

mind. He did not relate the apraxia or motor planning disorders

with

the hemochromatosis but there is ongoing research. I am happy the

blood banks are finally accepting their blood and we no longer have

to

pay for the treatment.

All the best,

Joanne

[Guest guest]

Hemochromatosis is actually one of the most common genetic mutation

in all western and northern european countries... it has to do with

the bubonic plague (being a carrier provided protective benefits to

the lethal form of the plague, so a huge number of the survivors

were carriers, it created a 'bottleneck' effect that led to a huge

number of western europeans being carriers of the gene

responsible). What can I say Im a nerd.

My aunts hematologist (she was worked up for it, but turned out to

have polycystic liver instead) told her that once a person is

diagnosed with it, its like a wildfire through the family...

everyone gets tested and a LOT of family members have it... so I

suspect having the family checked would be beneficial - especially

since symptoms can be so mild for so long, and then explode...

and its so easily treated.

Good luck!

Keely

www.caringbridge.org/visit/brandonandtyler

>

> Janice,

>

>

>

> The treatment for anyone diagnosed with hemochromatosis is to

phlebotomize

> if not every week, once a month depending on your doctor's

orders. You do

> need a prescription and in our case the blood bank keeps records

and

> measures his iron levels and report it to the doctor. A male with

iron

> levels at 13 and above with the HH diagnosis needs to bring his

iron levels

> below 11 as per doctors orders. Any normal male with this level

is ok. My

> husband sees his hematologist every 6 months and receives a new

prescription

> for phlebotomy each time. He was diagnosed back in 1994 when for

his 35th

> birthday I scheduled him for a physical exam with an internist who

left no

> stone unturned . . . little did I know we would find something.

He had

> complained of major stomach cramps and his iron level was at 19.

This was

> the best present I have given my husband, even though he did not

think so at

> the time. He hates doctors! In hindsight, this physical exam

added more

> years to his life and there were no signs of damage to any of his

vital

> organs. In order to diagnose, see a hematologist and ask for the

specific

> test for Hemochromatosis.

>

>

>

> The females in our family (my daughters) were not priority for

testing

> because the hematologist told us they were releasing the high iron

during

> menses. They may develop problems during premenopause and needed

to let

> their doctors know hemochromatosis is in their family history on

their

> father's side of the family. In the meantime, it is imperative

for the

> males to be tested and receive treatment asap if testing positive

for the HH

> gene. I believe my daughters will be tested soon. They are close

to their

> 20s and knowing for sure if they have HH will put their mind at

ease and

> they will be able to speak to their doctors about a plan. The HH

society

> has done a lot of research and in 10 years more information will be

> available to the public regarding this genetic disorder.

>

>

>

> Hope I answered your question Janice. If not email me privately at

> mulholland34@...

>

>

>

>

>

> All the best,

>

> Joanne

>

>

>

> P.S. A pint of blood is removed each time my husband visits the

blood bank.

>

>

>

>

>

>

>

>

> _____

>

> From:

> [mailto: ] On Behalf Of Janice

> Sent: Thursday, September 27, 2007 10:26 AM

>

> Subject: Re: [ ] Re: Hereditary hemochromatosis

>

>

>

> Joanne,

>

> My signinficant other has diverticulitis and often has blood in

his stool.

> He IS from Irish descent. I am chronically getting after him to

lay off the

> gluten/casien!

>

> When you speak of bleeding, what kind of bleeding?

>

> Janice

>

> [sPAM] [ ] Re: Hereditary

hemochromatosis

>

> My husband was diagnosed with hemochromatosis, but neither one of

> his

> parents know which side of the family it came from and when the

> hemotologist told us it could be dormant a generation, we thought

> testing would be beneficial just for family history.

>

> It is more important for males to be tested since girls usually

> bleed

> once a month well into their 40s and release the high iron from

> their

> blood that way. Treatment is phlebotomy. The excess iron

> can travel and leave excess deposits in main organs such as the

> liver,

> kidney, heart, pancreas. If not treated, hemochromatosis would

> develop into such diseases as psoriasis of the liver, diabetes,

and

> heart disease. Most patients have a internal heating system and

> tend

> to wear less clothing during the cold months. Their hands and

feets

> tend to be warmer, thus they can walk around in shorts all winter

> long. Most patients are from Irish decent and come from the

> European countries surrounding Hungary.

>

> My hemotologist did suggest testing for all my kids for peace of

> mind. He did not relate the apraxia or motor planning disorders

> with

> the hemochromatosis but there is ongoing research. I am happy the

> blood banks are finally accepting their blood and we no longer

have

> to

> pay for the treatment.

>

> All the best,

> Joanne

>

>