I care for two boys of one family.  The youngest suffers from
Marfans.  He will be two in August and is the sweetest little guy
ever.  Ok so he is not so little.

I would like to know more about the syndrome and see if there are
things I can watch for and if there is anything special i can do for
him.

He has some great hand skills and is now walking well with his foot
braces on.  The poor mom is geting conflicting advice from physical
therapists.  How long he needs to waer the braces.  Should he walk
without them.  should he sleep in them.  Good grief.  I myself take
them off a few times a day to check his feet for wrinkles in his socks
that can break down tender skin and to let air get at them.  He loves
to have his feet rubbed after too.  I don't blame him.  I wish someone
would rub my feet for me.

Perhaps there are others out there who have had similar issues.  I of
course will discuss all of this with his mom but I just wish to be
more informed on his condition.  I love these two little guys almost
as much as their mom does.  LOL

to get to the chat you have to go to links then to chat emergency and
then log in with your name it will take you to the chat

I am a Marfan (60 yrs) My father,sister,and youngest son died from
heart related Marfan  problems.  Every problem I have is Marfan
related,
cardiovascular, eye, dura,  ect.  I Had some major problems with my
eyes,
In my right eye the lens came completely loose for some uncountable
years... It finally rubbed a scar on the macula and caused 3 tears in
the
Retina.  These having been repaired; I was left with a spot in the
center of my vision... No, doctor could see it... The last one said
that it
was like a water mark, I could see it because I was looking out at
light, they could not see it because they were looking in to
darkness.
This spot is getting larger, and my vision is starting to blur more.
I am
really starting to having difficulties with reading, I work in
Medical
Records, I have to be able to read to work.  I asking if anyone one
else has had this problem, knows something that might help.. I am
scheduled to go in and see my Retina physician on next Monday..
  Thanks for any help --- Diane, Marfan from Az

I finally had an MRI yesterday, and my doc's office called and said it
showed that I had 'mild reactive bone marrow edema on the L3 inplate/
endplate??' What does that mean?? lol  I am hopefully going up to
Columbus to the Marfan clinic there soon, as soon as they schedule me.
I guess this is why I've been in so much pain, but I am wondering if
this is the same thing as 'dural ectasia'? Anybody know? The nurse at
my doc's office didn't know. Thanks, Tiffany

Nykki

 

It is perfectly fine for you to be here.  Welcome to the nut house!  We are all here to support you as much as we can.  We all (or a family member) have varying degrees of Marfan's from pretty minor (if there is such a thing) to full blown (as in my case).  Many of us are parents so can give you some advice there.  I am also curious to know if Colby's dad has any Marfan signs.  If so, no matter how minor they may seem, get him checked out ASAP!  I am a case of heredity, but many of us are genetic mutations.  If you have any questions I am sure at least one of us will respond!

Velda

---

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Yahoo! Messenger with Voice.

I finally had an MRI yesterday, and my doc's office called and said it
showed that I had 'mild reactive bone marrow edema on the L3 inplate/
endplate??' What does that mean?? lol  I am hopefully going up to
Columbus to the Marfan clinic there soon, as soon as they schedule me.
I guess this is why I've been in so much pain, but I am wondering if
this is the same thing as 'dural ectasia'? Anybody know? The nurse at
my doc's office didn't know. Thanks, Tiffany

Hello all,

My son Colby who is 10, was going for a yearly check up with his
doctor in May of last year. His regular doctor who he has seen since
he was born was away and another doctor was there. As he was being
checked the doctor asked about his heart mumar. Of course I had no
idea he had a heart mumar. So he refered us to a cardiologist. Anyway
long story short he was diagnosed with a a mitral valve prolapse and a
dilated aortic root. He also has features of Marfans but he only has 1
minor and 1 major so they could not confirm Marfans Syndrome so I hope
it is ok for us to be here. If it is not please let me know. He is
rechecked often to see if anything new has come up. They could not get
a good family history because my husbands father left when he was 4
years old and we know nothing about him really.

Well I guess I'll wait for an answer before I go on with more.
Thank you, Nykki

I finally had an MRI yesterday, and my doc's office called and said it
showed that I had 'mild reactive bone marrow edema on the L3 inplate/
endplate??' What does that mean?? lol  I am hopefully going up to
Columbus to the Marfan clinic there soon, as soon as they schedule me.
I guess this is why I've been in so much pain, but I am wondering if
this is the same thing as 'dural ectasia'? Anybody know? The nurse at
my doc's office didn't know. Thanks, Tiffany

CHAT Will Continue as usual, I have My own CHATROOM Which I Donated
to the group a couple of years ago, Meet up at
http://health.groups.yahoo.com/group/marfans_support_and_chat/files/c
hat.htm every week, really instead of clicking on chat click on
FILES when you get there click on chat.htm and you're in, you may
use your real name to log in when after clicking on the link.
I'll see you there, Mike




--- In marfans_support_and_chat@yahoogroups.com, "iowamarf"
<iowamarf@...> wrote:
>
> Yahoo groups is not supporting chats anymore.  Until someone can
find a
> better way we will try to meet in a conference IM.
>
> IM me iowamarf or someone else you expect to be in the group and
we
> will try to get everyone together!!
>

Yahoo groups is not supporting chats anymore.  Until someone can find a
better way we will try to meet in a conference IM.

IM me iowamarf or someone else you expect to be in the group and we
will try to get everyone together!!

I heard back from Libby yesterday. She wants me to go ahead and
schedule an appt to have tests done and be examined for having Marfans.
She was so informative, and listened to everything I needed to talk
about, didn't act rushed at all, although I am sure her plate is full.
I hung up the phone and just cried. I don't want Marfans. I don't want
to know that I passed it on to my kids. I don't want to be in pain
anymore. Ignorance was bliss! (Except while in pain, and frustrated not
knowing what was causing it)  I am really scared, but afraid to tell
anyone. I am 23, in so much pain that one child I watch (he's 6) told
me this morning that he thinks he knows what's wrong with me, I'm
having another baby, lol. I guess in my attempts to get up off of the
floor onto my feet I was panting and crying out in pain, he figured it
must be another baby!!
I am so happy I found this group. I wanted to say thank you to everyone
that has responded or thought of us. I'm sorry I can't write back to
everyone individually right now. I thank you much for your support. It
feels good to know that there are people who understand what this is,
and what I have ahead of me (us). Thanks for listening, I'll go back to
my labor pains  :)    Tiffany

--- In marfans_support_and_chat@yahoogroups.com, Kelly Lee
<kelee0498@...> wrote:
>
> Tiffany,
>
>   I have heard that without a referral from a doctor - they wont talk
to you individually.  That place at Ohio State University in Columbus
is the best place to go.  My cardiologist said that was the best place
to go for the genetic testing from where I am at (in Wisconsin).
>   Kelly
>

I got that yesterday too also Deborah. I am thinking that in the future
someone is going to have to open the room and then issue invites.  That
actually sounds like a lot of work.  Anyone have any ideas?  Lori

I cannot get into chat.  This is the message that I get when I try -
We're sorry, Yahoo! Chat is not available within Yahoo! Groups. HELP
I'm being held captive!

I have tried calling the Ohio State University in Columbus at their
connective tissues disorder clinic twice now, and have left messages
with no reply. I am wanting to have the blood test done on myself,
and if that's positive, then have my children tested. My twins are
identical, so if one has it the other does, too. Where did you go for
testing? I am located between Cincinnati and Dayton, but willing to
travel for great treatment. Thanks, Tiffany

--- In marfans_support_and_chat@yahoogroups.com, KIMBERLY MANSI
<kmansi@...> wrote:
>
> Tiffany,
>   
>   I am from Ohio to and I am diagnosed with Marfans.  They have a
genetic test they can do today through blood work.  You may want to
be tested to see if you have the gene and to see if your children
have the gene.  You may also want to have a MRI of your spine
complete to see if you may suffer from scoliosis or "dural ectasia"
these conditions are also part of Marfans.  I have lower back pain by
my tailbone and it was found that I have a cyst located there, its
actually part of my spine ballooning out due to weakend tissue.  If
you have similar back pain in your lower back you may want to look
into this.  Most importantly find a physician who has experience with
this disease so you are correctly treated.  Call the Marfans
Foundation for a referral.
>   
>   Good luck!
>   Kim
>
> kadins_mom2001 <kadins_mom2001@...> wrote:
>   My name is Tiffany, I am 23 years old and have three children
(born
> 5/7/01, 5/1/04, and 5/1/04). I am 6' tall and weighed 150 lbs (up
> until I went on antideppressants after post partum depression
issues
> after my twins were one year old, now I'm at 175).
>
> I don't know all too much about Marfan's, but have been told by my
> physician (a couple of years ago) that he thinks I have the
syndrome
> (is that what it is classified as?). All of my childhood I had
SEVERE
> chest pains and it hurt really bad to take more than a very shallow
> breath and doctors always just told my parents that it was heart
burn
> (they did no tests to determine what it was).
>
> My chest wall is deformed (as is my dad's) and it is very
noticeable
> to others if I wear a tank top. Three years ago I had a spontaneous
> pneumo thorax (collapsed lung) and it was the most excruciating
pain
> and my left side went numb. It was similar pain that I had always
had
> as a child, only worse. I have had an EKG performed, as well as a
> stress test (these were about 3 years ago, after the pneumo thorax)
> and the results were normal (except for a right brachial branch
> block, which my cardiologist said was normal).
>
> If I lye on my left side too much during the night I wake up in
sever
> pain the next morning, or throughout the night. My left side is the
> one that sticks out further. The pain feels as though my bones are
> breaking into my chest.
>
> Fast forward to today.... I am in so much pain for at least one
third
> of my day due to lower back issues. I just went for Xrays on Friday
> to determine the cause of the pain (which my new physician thinks
> could be a disk) and am supposed to start physical therapy and go
for
> MRI testing soon.
>
> Also, how can I tell at the ages my children are at now if I have
> passed this on to them, if it is in fact Marfans?
>
> I am sure I am leaving something out, but I have never spoken with
> anyone that has Marfans and was wondering if any of this sounds
> familiar to anyone here.
>
> Thanks for reading this far! Tiffany (OHIO) 
>
>
>
>
>
>    
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>    
>     Visit your group "marfans_support_and_chat" on the web.
>    
>     To unsubscribe from this group, send an email to:
>  marfans_support_and_chat-unsubscribe@yahoogroups.com
>    
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>    
> ---------------------------------
>

I could not agree with you more Lee, I would love to not have to "worry" about this anymore. What we have noticed is with our sons heart, the progression of the dialted aortic root has made no changes since he was put on this med. He was on Captopril, Digoxin, Aldoctone, Lasix just to name a few before and he is now on Losartin, Lasix and Atenonol. We have also noticed an increase in strength, energy and some weight gain, although he is still very thin. As far as side effects, we have experienced none so far, he did have back surgery last May and he went into an irregular rythem that scared me to death, but Dr. Dietz got right in there and said it had nothing to do with the Losartin, it was just a rythem problem that he may incur from time to time. He was not walking, nor making any attempt to do so, and was always weak and tired. I now am having a hard time keeping up with him and he is very close to walking without walking sticks. I hope you find this news encouraging. We feel truly blessed to be given such an opportunity to "try" this drug out. I am in contact with one of the other mothers' whose child is on the trial and he has shown signifigant changes also. I pray that this is the "one" we are looking for and I pray that everyone has the option to take advantage of it. Please feel free to ask me any more questions.

Christy

---

From: Lee Parks <wt_lparks@...>
Reply-To: marfans_support_and_chat@yahoogroups.com
To: marfans_support_and_chat@yahoogroups.com
Subject: RE: [marfans_support_and_chat] Marfan Breakthrough
Date: Sat, 8 Apr 2006 10:45:33 -0700 (PDT)

Would you be willing to share (in laymen's terms) what differences they (or you) have  noticed?

 

This is almost too good to be true and I am forcing myself to remain calm and pessimistic but if this is confirmed by peer review studies there is going to be a lot of tears of gratitude and prayers of thanks. 

 

 It may be that I am just too old and getting soft in the middle but having Marfans and being the father of five young children, I have already noticed tears refusing to be held back each time I read this report. 

 

Maybe some day we will no longer have a need for this forum.

 

OK Lee

christy crawford <christycra@...> wrote:

My 5 year old son has been on Losartin for over 2 years. He is one of three children that Johns Hopkins, and Dr. Dietz, have been following. We have seen incredible results with this medicine and I highly advise all to consider this option.

Christy Crawford

---

From: "bufbandit" <bufbandit@...>
Reply-To: marfans_support_and_chat@yahoogroups.com
To: marfans_support_and_chat@yahoogroups.com
Subject: [marfans_support_and_chat] Marfan Breakthrough
Date: Fri, 07 Apr 2006 20:07:37 -0000

Dear NMF
Members,                                                        
                                                                     
     
                                                                     
     
  The National Marfan Foundation (NMF) is excited to announce an
important 
  breakthrough in Marfan research which was published yesterday in
Science.
  Scientists at Johns Hopkins have used a blood pressure medicine
already  
  on the market, losartan (Cozaar), to prevent a potentially
fatal         
  weakening of arteries in mice with Marfan syndrome. The findings
are     
  considered a breakthrough discovery because they are the first
to        
  identify a drug that can prevent Marfan syndrome's most life-
threatening 
  complications from developing and potentially reverse the damage
already 
  done. The NMF is proud to have been one of the funders for this
study.   
                                                                     
     
                                                                     
     
  Based on the successful studies in the mouse models, the
researchers and 
  the NMF have worked with the National Heart, Lung and Blood
Institute    
  (NHLBI) and its affiliated network of hospitals in the Pediatric
Heart   
  Health Network to begin a clinical trial for people with Marfan
syndrome,
  which is expected to start in the fall. The NMF has promised
to          
  collaborate with NHLBI on patient recruitment and support
throughout this
  trial. In addition, the NMF would like to support complementary
studies  
  to the clinical trial to explore potential effects on other body
systems.
                                                                     
     
                                                                     
     
  The NMF is very excited about these findings and we are eager to
begin   
  the clinical trial this fall. Please visit the NMF website HERE for
more 
  information about the clinical trial and how you can participate.
If you 
  have any questions or would like to help the NMF financially
support     
  these efforts please contact Dr. Josephine Grima at the NMF
at           
 
jgrima@...                                                    
   
                                                                     
     
                                                                     
     
  We will be sure to keep you posted of any progress
made.                 
                                                                     
     
                                                                     
     
 
Sincerely,                                                           
   
  Carolyn
Levering                                                         
  President &
CEO                                                          
  National Marfan
Foundation                                               
                                                                     
     
                                                                     
     
  NMF
Logo                                                                 
  NMF
Network                                                              
  National Marfan
Foundation                                               
                                                                     
     
                                                                     
     
                                                                     
     
  email:
nmfnetwork@...                                             
  phone: 1-800-
8MARFAN                                                     
  web:
http://www.marfan.org                                               
                                                                     
     
                                                                     
     


                                                                     
     
                                                                     
     
                                                                     
     
                                                                     
     
Forward email                                                   

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Marfan syndrome

I have tried calling the Ohio State University in Columbus at their
connective tissues disorder clinic twice now, and have left messages
with no reply. I am wanting to have the blood test done on myself,
and if that's positive, then have my children tested. My twins are
identical, so if one has it the other does, too. Where did you go for
testing? I am located between Cincinnati and Dayton, but willing to
travel for great treatment. Thanks, Tiffany

--- In marfans_support_and_chat@yahoogroups.com, KIMBERLY MANSI
<kmansi@...> wrote:
>
> Tiffany,
>   
>   I am from Ohio to and I am diagnosed with Marfans.  They have a
genetic test they can do today through blood work.  You may want to
be tested to see if you have the gene and to see if your children
have the gene.  You may also want to have a MRI of your spine
complete to see if you may suffer from scoliosis or "dural ectasia"
these conditions are also part of Marfans.  I have lower back pain by
my tailbone and it was found that I have a cyst located there, its
actually part of my spine ballooning out due to weakend tissue.  If
you have similar back pain in your lower back you may want to look
into this.  Most importantly find a physician who has experience with
this disease so you are correctly treated.  Call the Marfans
Foundation for a referral.
>   
>   Good luck!
>   Kim
>
> kadins_mom2001 <kadins_mom2001@...> wrote:
>   My name is Tiffany, I am 23 years old and have three children
(born
> 5/7/01, 5/1/04, and 5/1/04). I am 6' tall and weighed 150 lbs (up
> until I went on antideppressants after post partum depression
issues
> after my twins were one year old, now I'm at 175).
>
> I don't know all too much about Marfan's, but have been told by my
> physician (a couple of years ago) that he thinks I have the
syndrome
> (is that what it is classified as?). All of my childhood I had
SEVERE
> chest pains and it hurt really bad to take more than a very shallow
> breath and doctors always just told my parents that it was heart
burn
> (they did no tests to determine what it was).
>
> My chest wall is deformed (as is my dad's) and it is very
noticeable
> to others if I wear a tank top. Three years ago I had a spontaneous
> pneumo thorax (collapsed lung) and it was the most excruciating
pain
> and my left side went numb. It was similar pain that I had always
had
> as a child, only worse. I have had an EKG performed, as well as a
> stress test (these were about 3 years ago, after the pneumo thorax)
> and the results were normal (except for a right brachial branch
> block, which my cardiologist said was normal).
>
> If I lye on my left side too much during the night I wake up in
sever
> pain the next morning, or throughout the night. My left side is the
> one that sticks out further. The pain feels as though my bones are
> breaking into my chest.
>
> Fast forward to today.... I am in so much pain for at least one
third
> of my day due to lower back issues. I just went for Xrays on Friday
> to determine the cause of the pain (which my new physician thinks
> could be a disk) and am supposed to start physical therapy and go
for
> MRI testing soon.
>
> Also, how can I tell at the ages my children are at now if I have
> passed this on to them, if it is in fact Marfans?
>
> I am sure I am leaving something out, but I have never spoken with
> anyone that has Marfans and was wondering if any of this sounds
> familiar to anyone here.
>
> Thanks for reading this far! Tiffany (OHIO) 
>
>
>
>
>
>    
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>    
>     Visit your group "marfans_support_and_chat" on the web.
>    
>     To unsubscribe from this group, send an email to:
>  marfans_support_and_chat-unsubscribe@yahoogroups.com
>    
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>    
> ---------------------------------
>