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CF and Marfan Syndrome?

anonymous

New member
We have both cystic fibrosis and Marfan Syndrome running in the family.
I'm pretty sure we have one family member with both.
Anyone else here have the same situation in their family?
Thanks,
LisaV
 

anonymous

New member
We have both cystic fibrosis and Marfan Syndrome running in the family.
I'm pretty sure we have one family member with both.
Anyone else here have the same situation in their family?
Thanks,
LisaV
 

Emily65Roses

New member
I don't have any Marfan's in my family. But we have a host of different things: all sorts of cancers, bleeding disorders, Alzheimer's, Parkinson's, one cousin had a brain tumor, and another has situs inverse. I don't think, though, that anyone had more than one big one. My grandfather had Alzheimer's and cancer, but being old it wasn't that big a shock. I have a couple of little things (joint problems, depression, asthma) but with the CF, that's expected. I don't know anyone personally with Marfan, though Mike's doctors once thought he had it.
 

Emily65Roses

New member
I don't have any Marfan's in my family. But we have a host of different things: all sorts of cancers, bleeding disorders, Alzheimer's, Parkinson's, one cousin had a brain tumor, and another has situs inverse. I don't think, though, that anyone had more than one big one. My grandfather had Alzheimer's and cancer, but being old it wasn't that big a shock. I have a couple of little things (joint problems, depression, asthma) but with the CF, that's expected. I don't know anyone personally with Marfan, though Mike's doctors once thought he had it.
 

Emily65Roses

New member
This explains what it is.
<a target=new class=ftalternatingbarlinklarge href="http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=2">http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=2</a>
 

Emily65Roses

New member
This explains what it is.
<a target=new class=ftalternatingbarlinklarge href="http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=2">http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=2</a>
 

kybert

New member
i know someone on the net who has cf and marfans. here is her website <a target=new class=ftalternatingbarlinklarge href="http://www.angelfire.com/ms2/CysticFibrosisMarfan/index.html">http://www.angelfire.com/ms2/CysticFibrosisMarfan/index.html</a>
 

kybert

New member
i know someone on the net who has cf and marfans. here is her website <a target=new class=ftalternatingbarlinklarge href="http://www.angelfire.com/ms2/CysticFibrosisMarfan/index.html">http://www.angelfire.com/ms2/CysticFibrosisMarfan/index.html</a>
 
T

TonyaH

Guest
Hi Lisa,

My 8 year old son has CF and my 21 year old nephew(my husband's sister's son) has Marfans. So, first cousins. I have never thought of a connection, but I remember questioning my nephew's poor weight gain, very similar to my son. My son, Andrew was diagnosed with CF at 2 months, and my nephew, Brian, was just diagnosed with Marfans about a year ago. I was not surprised to hear the diagnosis, as he is a textbook case, but am surprised to hear someone express a possible correlation between the two. Explain your thoughts!
 
T

TonyaH

Guest
Hi Lisa,

My 8 year old son has CF and my 21 year old nephew(my husband's sister's son) has Marfans. So, first cousins. I have never thought of a connection, but I remember questioning my nephew's poor weight gain, very similar to my son. My son, Andrew was diagnosed with CF at 2 months, and my nephew, Brian, was just diagnosed with Marfans about a year ago. I was not surprised to hear the diagnosis, as he is a textbook case, but am surprised to hear someone express a possible correlation between the two. Explain your thoughts!
 

anonymous

New member
Wow this is interesting as before I was diagnosed with CF, they had tentatively diagnosed me with Marfans, BUT decided i didn't have it as my heart appears to be fine.
However, lately i've been having palpitations, instances of fast hearbeat and in general symptoms that i believe are heart related and nothing to do with CF.

My CF is also, far from normal as far as clinical presentation is concerned. Although my lung function is quite low (well was, i've only had it tested once) i've only been in hospital once in 37 years and on IV's twice. I'm beginning to think I have both CF and Marfans, but my CF mainly effects my digestion and my Marfans is more responsible for my lung damage e.g. Bronchiestasis and low lung functions. I've been thinking about this extensively over the past few weeks and was therefore very surprised and intrigued to see this post!!

Kat (37, with CF)
 

anonymous

New member
Wow this is interesting as before I was diagnosed with CF, they had tentatively diagnosed me with Marfans, BUT decided i didn't have it as my heart appears to be fine.
However, lately i've been having palpitations, instances of fast hearbeat and in general symptoms that i believe are heart related and nothing to do with CF.

My CF is also, far from normal as far as clinical presentation is concerned. Although my lung function is quite low (well was, i've only had it tested once) i've only been in hospital once in 37 years and on IV's twice. I'm beginning to think I have both CF and Marfans, but my CF mainly effects my digestion and my Marfans is more responsible for my lung damage e.g. Bronchiestasis and low lung functions. I've been thinking about this extensively over the past few weeks and was therefore very surprised and intrigued to see this post!!

Kat (37, with CF)
 

JazzysMom

New member
This is where the mutation connection would be a help if there was more confirmation on it. Since U arent sure what is what.......what is causing what etc!
 

JazzysMom

New member
This is where the mutation connection would be a help if there was more confirmation on it. Since U arent sure what is what.......what is causing what etc!
 

anonymous

New member
I'm not sure there really is a connection.
It's just that both run in my husband's family and I'm pretty sure at least one family member has both (CF for sure, no genetic test for Marfan).
Anyway, though I know having one genetic illness doesn't immunize you from another, I still have always thought it was a bit "much" for two of these things to be running through the family.
Made me wonder if other folks had such a situation.
Also, since there's no test for Marfan's, they are pretty sure it is underdiagnosed today - definately was in the past.
 

anonymous

New member
I'm not sure there really is a connection.
It's just that both run in my husband's family and I'm pretty sure at least one family member has both (CF for sure, no genetic test for Marfan).
Anyway, though I know having one genetic illness doesn't immunize you from another, I still have always thought it was a bit "much" for two of these things to be running through the family.
Made me wonder if other folks had such a situation.
Also, since there's no test for Marfan's, they are pretty sure it is underdiagnosed today - definately was in the past.
 
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