Re: Survey: Sarc in families

[Guest guest]

Rose, I have a son who is more me then his Dad, he eats right, sports so gets a lot of exercise, etc. on the good stuff.  But drinks too much, I'm sure part of that is the age 22, he does something else I think he should quit, but again the age, But I tell him it could still catch up with him later.

so what does a Mom do? My Dad's side is Sweden, and Mom's side Norwegian.   It would be interesting to see if anyone else has family members with this, it seems like I heard there is someone that does?? 

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Marla, your family is Norwegian, right?  So you would expect to see a higher incidence.  I've also read that in the U.S., the incidence is higher in African-Americans & they are more likely to get the severe aspects.  But at least on this list I can only think of 3 or 4 people who have reported knowing of another family member with sarc.  It would be interesting to do a survey & see if there are more. 

 

How about it, members?  How many of you have other family members with known or suspected sarc? 

 

As I said in an earlier post, there is increasing evidence showing a genetic predisposition (which many family members could carry), then the disease process is triggered by something--lots of suspects, but nothing concrete yet.  So families might carry the gene or whatever that increases susceptibility, but maybe only one person will actually get sick.  Lots of research to be done yet.  I would recommend that if even one person gets sarc, that all family members (especially close family) do everything possible to balance their immune system--nutrition, exercise, avoiding environmental toxins as much as possible, avoiding chemical exposure (including drugs if there is a healthier alternative).  I can't tell you with certainty that this will protect anyone from the sarc monster, but it sure won't hurt.  I would welcome other opinions & input.

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

  

To: Neurosarcoidosis From: mebramer@...Date: Fri, 17 Dec 2010 16:49:53 -0700

Subject: Re: Does Sarcoidosis run in families?

My answer to this would be YES.   My mother has 2 cousins in Norway with Sarcoid, at least one with NS, and my Mothers sister, had Sarcoidosis more lung problems, but was not able to walk for the past few years, she passed this past spring at the age of 82, which is good.  And I was told at my Aunts funeral that one of her daughters, my cousin has it to, but not much problem with it.

So I'm guessing Yes in runs in the family. I read an article that Sarcoid is higher in the Scandinavian then  the African American.  I think some still think it's higher in The African American, but they have more trouble with there lungs, and the Scandinavian higher in NeuroSarcoid.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I'm sure I posted this question but it hasn't shown up in the feed??Anyway does anyone know does sarcoidosis run in families?

[Guest guest]

My daughter has suspected neurosarc, with myself being confirmed. My grandmother

was said to have a " mysterious ailment " that they never figured out, that sounds

suspiciously like sarc. We are of Irish decent.

[Guest guest]

My daughters (39 & 40) are now admitting that I was right about lots of stuff they blew off years ago. Wouldn't it be nice if there was a magic wand to wave, and they would recognize the wisdom of their elders when they were still young?!?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sat, 18 Dec 2010 11:30:46 -0700Subject: Re: Survey: Sarc in families

Rose, I have a son who is more me then his Dad, he eats right, sports so gets a lot of exercise, etc. on the good stuff. But drinks too much, I'm sure part of that is the age 22, he does something else I think he should quit, but again the age, But I tell him it could still catch up with him later. so what does a Mom do? My Dad's side is Sweden, and Mom's side Norwegian. It would be interesting to see if anyone else has family members with this, it seems like I heard there is someone that does?? MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Marla, your family is Norwegian, right? So you would expect to see a higher incidence. I've also read that in the U.S., the incidence is higher in African-Americans & they are more likely to get the severe aspects. But at least on this list I can only think of 3 or 4 people who have reported knowing of another family member with sarc. It would be interesting to do a survey & see if there are more. How about it, members? How many of you have other family members with known or suspected sarc? As I said in an earlier post, there is increasing evidence showing a genetic predisposition (which many family members could carry), then the disease process is triggered by something--lots of suspects, but nothing concrete yet. So families might carry the gene or whatever that increases susceptibility, but maybe only one person will actually get sick. Lots of research to be done yet. I would recommend that if even one person gets sarc, that all family members (especially close family) do everything possible to balance their immune system--nutrition, exercise, avoiding environmental toxins as much as possible, avoiding chemical exposure (including drugs if there is a healthier alternative). I can't tell you with certainty that this will protect anyone from the sarc monster, but it sure won't hurt. I would welcome other opinions & input.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Fri, 17 Dec 2010 16:49:53 -0700Subject: Re: Does Sarcoidosis run in families?My answer to this would be YES. My mother has 2 cousins in Norway with Sarcoid, at least one with NS, and my Mothers sister, had Sarcoidosis more lung problems, but was not able to walk for the past few years, she passed this past spring at the age of 82, which is good. And I was told at my Aunts funeral that one of her daughters, my cousin has it to, but not much problem with it. So I'm guessing Yes in runs in the family. I read an article that Sarcoid is higher in the Scandinavian then the African American. I think some still think it's higher in The African American, but they have more trouble with there lungs, and the Scandinavian higher in NeuroSarcoid. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I'm sure I posted this question but it hasn't shown up in the feed??Anyway does anyone know does sarcoidosis run in families?

[Guest guest]

We have 600+ members in this group; so far 3 have responded with positive family histories. I know it's a busy time with the holidays, but maybe after the first of the year, we'll hear from more of you. I'm pretty sure we have more members with positive family histories.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Sun, 19 Dec 2010 16:21:07 +0000> Subject: Re: Survey: Sarc in families> > My daughter has suspected neurosarc, with myself being confirmed. My grandmother was said to have a "mysterious ailment" that they never figured out, that sounds suspiciously like sarc. We are of Irish decent.> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

No one else in my family has been diagnosed with sarcoidosis but I am a first generation American with both sides of my family from Hungary. Medical history on previous family members is sketchy but there is alot of history of tuberculosis from late 19th century to mid 20th. It's possible that TB was given to many lung diseases before they had more sophisticated diagnosis and treatment there. (Things were pretty backward in places other than Budapest until the 1980s. Those who lived in the villages and country didn't often have indoor plumbing until then!)

Vivien

Subject: RE: Re: Survey: Sarc in familiesTo: neurosarcoidosis Date: Monday, December 20, 2010, 2:10 AM

We have 600+ members in this group; so far 3 have responded with positive family histories. I know it's a busy time with the holidays, but maybe after the first of the year, we'll hear from more of you. I'm pretty sure we have more members with positive family histories.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Sun, 19 Dec 2010 16:21:07 +0000> Subject: Re: Survey: Sarc in families> > My daughter has suspected neurosarc, with myself being confirmed. My grandmother was said to have a "mysterious ailment" that they never figured out, that sounds suspiciously like sarc. We are of Irish decent.> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Hi Rose,

My mom's aunt had immigrated to the US a few years before and travelled to Hungary to visit and brought my mom back to NYC with her. I often think of how hard that must have been to leave her parents and sisters and all that she knew and move to NYC.

In Hungary, she lived in a little village in the countryside, houses with thatched roofs, no electricity, phone, indoor plumbing, autos...very primitive. What a shock NYC must have been (in 1937) to her.

When I went there for the first time in 1961, you had to walk through the ducks, geese (they really hurt when they pecked at your legs) pig pens to get to the outhouse.

When she got here, she lived in a tiny, tiny, tiny apartment in Yorkville section of Manhattan with 3 uncles and 1 aunt (all from the old country) and NO privacy. She slept on the living room sofa and they bathed in a kitchen sink that converted into a tub. (I took many baths in there as a kid when I would stay there.) She lived there until she married at 24! I cannot believe how miniscule that apt was and how privileged we are today with our lifestyles!

I always felt that my trips to Hungary and my parents being immigrants gave me insights early on that many didn't have growing up in the US. But then again, growing up in NYC, there were millions of stories of immigrants and it was certainly part of the cultural milieu. I think NYC was a great place to grow up in the 50s and 60s but moved out of there in 1980 and never looked back.

Vivien

Subject: RE: Re: Survey: Sarc in familiesTo: neurosarcoidosis Date: Monday, December 20, 2010, 2:10 AM

We have 600+ members in this group; so far 3 have responded with positive family histories. I know it's a busy time with the holidays, but maybe after the first of the year, we'll hear from more of you. I'm pretty sure we have more members with positive family histories.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Sun, 19 Dec 2010 16:21:07 +0000> Subject: Re: Survey: Sarc in families> > My daughter has suspected neurosarc, with myself being confirmed. My grandmother was said to have a "mysterious ailment" that they never figured out, that sounds suspiciously like sarc. We are of Irish decent.> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Hi ,

Both my mother and I have NS. Between both parents' families almost every

autoimmune disease is repersented. This maybe because we are Blacks and

therefore have a very mixed ancestry, different parts of Africa various European

especially French and Native American especially Seminole which primarily reside

in Florida. Sarc is suppose to be more common in African Americans in the

Southeast US. We live in the Northeast but moved for 10 years when I was growing

up. We moved to Florida around the time our symptoms developed. I find it

interesting though that some believe it (sarcoid) can be triggered by a viral

infection because both my mother and I were caught in a flash flood where the

sewers overflowed just prior to developing symptoms. My mother's diagnosis was

confirmed by biopsy when it spread outside her nervous system and mine just

doesn't match any other diagnosis and I have a + family history.

>

>

> We have 600+ members in this group; so far 3 have responded with positive

family histories. I know it's a busy time with the holidays, but maybe after

the first of the year, we'll hear from more of you. I'm pretty sure we have

more members with positive family histories.

>

>

>

>

>

> Ramblin' Rose

> Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

>

>

>

>

> > To: Neurosarcoidosis

> > From: smillers07@...

> > Date: Sun, 19 Dec 2010 16:21:07 +0000

> > Subject: Re: Survey: Sarc in families

> >

> > My daughter has suspected neurosarc, with myself being confirmed. My

grandmother was said to have a " mysterious ailment " that they never figured out,

that sounds suspiciously like sarc. We are of Irish decent.

> >

> >

> >

> >

> > ------------------------------------

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> >

> >

> > Message Archives:-

> > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant messengers.

> > http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

> >

[Guest guest]

That's interesting. I know that when someone has one autoimmune disorder, it's common to develop others. Your family has sure gotten more than your share, haven't you?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Sat, 1 Jan 2011 18:45:55 +0000> Subject: Re: Survey: Sarc in families> > > > Hi ,> Both my mother and I have NS. Between both parents' families almost every autoimmune disease is repersented. This maybe because we are Blacks and therefore have a very mixed ancestry, different parts of Africa various European especially French and Native American especially Seminole which primarily reside in Florida. Sarc is suppose to be more common in African Americans in the Southeast US. We live in the Northeast but moved for 10 years when I was growing up. We moved to Florida around the time our symptoms developed. I find it interesting though that some believe it (sarcoid) can be triggered by a viral infection because both my mother and I were caught in a flash flood where the sewers overflowed just prior to developing symptoms. My mother's diagnosis was confirmed by biopsy when it spread outside her nervous system and mine just doesn't match any other diagnosis and I have a + family history. > > >> > > > We have 600+ members in this group; so far 3 have responded with positive family histories. I know it's a busy time with the holidays, but maybe after the first of the year, we'll hear from more of you. I'm pretty sure we have more members with positive family histories.> > > > > > > > > > > > Ramblin' Rose> > Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Sun, 19 Dec 2010 16:21:07 +0000> > > Subject: Re: Survey: Sarc in families> > > > > > My daughter has suspected neurosarc, with myself being confirmed. My grandmother was said to have a "mysterious ailment" that they never figured out, that sounds suspiciously like sarc. We are of Irish decent.> > > > > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > Members Database:-> > > Listings of locations, phone numbers, and instant messengers.> > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > >