marfans syndrome.

[Tangarine Mummy Machine]

I have informed my family i have a chromisonal abnormality. It can cause others such as turners, downs ect. I have a 1 in 2 chance in my children. I am ok with that. But it can cause other complications like premature labour, heart conditions, liver failer, tumers, turners syndrome ect in babies.

My brother had a baby with turners and other problems that was aborted. Should i be talking to him one on one what has happened. He may have marfans too but i don't want him to blame himself for what has happened. Also i have a sister, she may also have it. If she does she could only have premmie babies due to placental failure.

I am not looking forward to all the crap that is about to unfold. But i think i have to inform everyone. :(

[zombiekitty]

I am so sorry you are going through this. I have a close friend with Marfans and it can be tough and tougher when speaking to family about it.
Hugs to you x

[SPC]

Presumably you know the health risks associated with Marfans? So you need to tell your brother, so that he can have his heart checked. Have you had genetic counselling? It's not like it's your fault that your family has a genetic problem. You're going to help them and their children to be healthier because they will be informed and able to make decisions about how to proceed. Hopefully you can all support each other through what sounds like it will be a hard time for you all.

[Tangarine Mummy Machine]

the really hard thing is i am pro-life so talking to others about what marfans is, may potentionally end the life of (not meaning to ofend pro-choicers but this is what i beleive) babies. :( it is very difficult for me to do this.

I know the health risks. I have multiple already.

[c38]

Yeah you do need to talk to them. I'm assuming you have seen a genetic counsellor? Your family members can talk to their GP about talking to one too if you don't already have a contact process for them.

My thoughts are with you, genetic conditions can be really hard for some to deal with to deal with and explain the complex feelings it conjours up. The "time bomb thing. My friend is going through this at the moment. They have known for some time that their son has a genetic conditon, but they could only find the gene carried by her. Finally after sending blood to few different centres they have found her husbands gene. He is totally devestated as for all these years he has been kidding himself that the docotors had made a mistake and his son was fine, because he knew he needed to have two genes and they had only found one. He also has older childrent from a previous marriage, and now he HAS to tell them that their future children may be at risk, and he has gone to pieces at the thought. Good luck, you are doing the right thing... hugs all round

[nothanksbye]

All you have to do is pass on the information.

Everyone else is free to make their own decisions about abortion.

You dont even need to discuss that so i dont think its a problem at all.

Just ring them and tell them what you have discovered and then they can go speak to a dr themselves.

[CookiesRYum]

sorry im a bit confused, ithought you said you already told your family? i don't know much about it, but if it runs in the whole family and has run in the family for prob many generations - then wouldn't the whole family already know about it?


termination is a personal thing, so I assume your brother and his partner made that decision based on their own beliefs?

if he doesn't already know about his own medical condition, then of course you should tell him - especially if he could have a heart condition - but surely he already knows all this and it's not your responsibility to tell him?

[Tangarine Mummy Machine]

i have said i have marfans but not what it entails. It is a tad touchy for me as my whole family is not just pro choice but pro abortion. Blah. As pro life it is really hard. I am the only one who hasn't had at least one!

I know i need to say everything about what happens but it kindof like, i am to blame for not having perfect geans ( i don't beleive it but my family is very pro white german superier blood lines people).

[nothanksbye]

i have said i have marfans but not what it entails. It is a tad touchy for me as my whole family is not just pro choice but pro abortion. Blah. As pro life it is really hard. I am the only one who hasn't had at least one!

I know i need to say everything about what happens but it kindof like, i am to blame for not having perfect geans ( i don't beleive it but my family is very pro white german superier blood lines people).

what is pro abortion?

sorry but i dont believe anyone is pro abortion.

just tell them and then leave them to work it out themselves. You dont really need to get involved.


Or better still....write to them and let them know where they can get more info.

[CookiesRYum]

So you want to discuss with them this condition AND your pro-life stance? Is that what you mean?

that YOU wouldn't have an abortion even if you have a child/fetus with abnormalities? And you wanna talk to your brother about his choise to terminate and let him know that the fetus/child may have had abnormalities because of this condition?

[Tangarine Mummy Machine]

yes buttoneska.

I will try to explain my families stance on abortion. If you dont earn more then 100k per year, both parents dont work full time, you are under 30, there may be an abnormality ect =terminate.

I dont feed into this. My brother has had over 6 with differant women that i know of, my sister has had 4 with her current partner, my mum had 8 between my brother and me.

By explaining all the implications to everyone, i will have it on my head. :(

i feel like :barf: over this whole situation.

[SassyMummy]

I think it would be very wrong of you to keep information that could be important for them to know just so you can push your agenda in regards to abortion.

You may not agree with their choices, but that choice is theirs to make. They really should be made aware of the health implications for themselves or for their future offspring. This doesn't mean they'll automatically go out having abortions willy-nilly, but perhaps it means that if they want to TTC, they will be able to look into the possible risks/ways to deal with things that may come up if they too have this health problem.

You don't need to go into huge details about your condition, but I do think you need to say to them something like, "Look, I have Marfans, and you may have it too. You really should get checked, as it's very serious. It could possibly mean serious issues with your heart and lungs, and it could also mean problems for any babies you have... it might not too, but it's worth getting checked out anyway."

You don't need to mention anything more. Your stance on abortion will mean little to them, and given that they've recently been through a termination, it would be incredibly insensitive, and even cruel, to mention it at all.

[CookiesRYum]

well all you can do is make your own choices, and them their... don't let their beliefs upset you...nor sway your own convictions...

[SorenLorensen]

Sorry to be blunt but at first you sounded concerned about your siblings but now you speak as if this is going to be hard for you based on your morals in regards to abortion.
You have it, you are dealing with it and now you have (in my opinion) an obligation to inform your siblings that they too may have it.
The issue of abortion should not matter here, at the moment this is about them....

[Tangarine Mummy Machine]

I already said to everyone. "i have been diagnosed with marfan's. It is a chromasonal abnomality." that is all i said. I don't want to explain the condition, or who may have it, or what it could entail.

Being prolife makes this a lot tougher. If i was pro choice or even like "my family" i would say all the organ stuff, blood problems, asthma, early menopause, all other conditions.

[nothanksbye]

I already said to everyone. "i have been diagnosed with marfan's. It is a chromasonal abnomality." that is all i said. I don't want to explain the condition, or who may have it, or what it could entail.

Being prolife makes this a lot tougher. If i was pro choice or even like "my family" i would say all the organ stuff, blood problems, asthma, early menopause, all other conditions.

sorry but you are being very very selfish.

They need to know and what they do from then on is purely up to them.

It has NOTHING to do with you.

[Tangarine Mummy Machine]

It is everything to do with me. If i never told anyone about what happens, maybe my family would have few more babies that they wont just decide to abort like they have in the past. My feelings and thoughts for the next 80yrs are at stake. They have all aborted multiple children, if they do that after i inform them what the abnormality may cause, i will feel like i put the dager in their hands. They can always look up on the internet if they want to find out. I have said the name of the condition. :(

[SassyMummy]

Why this thread then?

If you don't want to tell them anything more, what is this thread even about?

At first it sounded as if you had this health issue and knew your siblings possibly had it too so wanted to warn them but were worried about the implications of telling them more about it (in case it led to more abortions, and because you didn't want your brother feeling like it was his fault his unborn baby had turners)... but now you're saying you don't want to tell them any details, or tell them to get checked out or whatever... so what is this about? Do you just want to whinge about them...? Because if that's the case (and it sounds like it may be), then why start a thread about a health issue in order to do it?

FWIW, I think you're being incredibly wrong by knowing that your siblings could possibly have a health issue that can be dangerous to both them and any offspring they produce, yet not mentioning a damn thing about it to them.

Simply telling them you have it doesn't mean much - sure, they could feel concern for you, but it doesn't mean they'll have any idea that they could have it too, or just how serious it is. For all they know, it just means you're a little lankier than average and not much else... which is hardly something they're gonna rush out and freak out about. If they know it could be dangerous to their own health, then they would be more likely to go get checked themselves.

I think you not telling them is as wrong as me having sex with someone, then finding out I have HIV, and telling them, "Oh, I have a life-threatening condition," but leaving it there. If I said it was HIV, they'd know to go get tested themselves. If I just say "life-threatening condition," or whatever, or name some disease they'll know nothing about (as would be the case with the majority of people and marfans... I had to google it), they might feel sorry for me but not realise just what kind of impact it could have on their own health.

You're being very selfish and wrong IMO OP.

Surely being pro-life extends to the life of adults too... not just the unborn.

[SorenLorensen]

prolife ??? what about their lives ?

You worry about the lives babies that have yet to be conceived but not the lives of 2 people already here.

What if one of them does have it and their heart is in need of attention ? how 'prolife' is it to keep that from them ?

[boysrgr8]

I think you should tell them what it means, actually I feel that it is incredibly important for you to share the genetic part of this syndrome.

TBH, it was passed onto you so you can't be to blame for them or future children having it. It is just something that happens, no one is at fault.

Regardless of the Marfan's, your siblings would choose to terminate without the information you have. It isn't something that you can claim as your issue because they are the parents and they already made that choice with previous pregnancies.

[missymoo9]

Op i see your point of view and i also agree with pp's but i really cant imagine how you feel re the whole pro abortion thing :(

[nothanksbye]

I would find it harder to live with the idea that a family member could die or get sick, because I withheld very important information.

I am actually shaking my head.

My mum had to find the child she adopted out, to tell her the risk of ovarian cancer.
As hard as it was to go through all of that , she knew how important it was to relay the information.

[WorkingClassMum]

Starting with your OP, when did you get your Dx? It's not like you found out today, or yesterday - so seeing that you have obviously known for the last few days if not longer, you needn't run out tonight and tell them tonight, or even tomorrow.

You should go back to your GP, get a referral for genetic counselling which will best help you about your family as well.

You owe it too your family to share this knowledge, regardless of their stances on life/abortion etc, but seeing as you have known this for awhile now, there is obviously no urgency tonight.

Keeping this a secret is soo very wrong - and if you are afraid of their immediate reaction, send them a letter

[Bubbles10]

I think you have been misinformed on the genetics of Marfan Syndrome. It can be caused by mutations on the FBN1 gene and it is inherited in an autosomal dominant manner (you only need one parent to pass on their affected gene for you to be affected).

(i can get more info but you are probably better off following up genetic counselling so you can get accurate info based on your family and symptoms)

Turner syndrome occurs when someone is missing a complete (or section of) the X chromosome, so they only have one sex chromosome (X instead or XX or XY).There are no known risk factors for Turner syndrome.

So having Marfan syndrome doesn't increase your chances of having a child with Turner or Down syndrome. It does give you a 50% chance of passing on the affected gene to your child and they may then have symptoms of Marfan syndrome though.

[Tangarine Mummy Machine]

i know it doesn't cause turners and marfans but there is an increase of various other chromosonal incidences in families with marfans. I was told by a genetic councellor. I was also advised if i have it at least one of my siblings have it and most likely both my children have it (they have physical charactoristics of it).

Also there are increased incidences of cp, severe allergies and autistic traits in families of marfans. At the moment it is all coincidental and no major studies have been done.

[gizmoduckus]

Marfan syndrome is a risk factor (http://en.wikipedia.org/wiki/Risk_factor) for spontaneous pneumothorax (http://en.wikipedia.org/wiki/Pneumothorax). In spontaneous unilateral pneumothorax, air escapes from a lung and occupies the pleural (http://en.wikipedia.org/wiki/Pleural) space between the chest wall and a lung. The lung becomes partially compressed or collapsed. This can cause pain, shortness of breath, cyanosis (http://en.wikipedia.org/wiki/Cyanosis), and, if not treated, death.This is something that I found when I googled Marfan syndrome. How would you feel if someone in your family died of this because they had no medical knowledge of it and didn't get the medical treatment for it?

To be honest, this all sounds so fishy to me because I am unable to believe that someone might hand someone in their family a death sentence because they are pro-life for the children that they might conceive.

[trishalishous]

devils advocate here, but have you considered that telling them might SAVE their unborn childs lives?
if I were high risk of a genetic problem, I would be far less likely to abort a healthy child for 'lifestyle' reasons, just in case it was the only healthy child I ever had.
all theoretically though as there are no conceivable circumstances where I would consider aborting my child.

[sam's mum]

This is something that I found when I googled Marfan syndrome. How would you feel if someone in your family died of this because they had no medical knowledge of it and didn't get the medical treatment for it?

To be honest, this all sounds so fishy to me because I am unable to believe that someone might hand someone in their family a death sentence because they are pro-life for the children that they might conceive.

but there is no treatment to prevent it, so there is nothing to do ahead of time.

If your lung collapses, you will know and get treatment regardless of the cause.

Having medical knowledge (a dx of marfans) won't really make a difference with this.

[beebs]

the really hard thing is i am pro-life so talking to others about what marfans is, may potentionally end the life of (not meaning to ofend pro-choicers but this is what i beleive) babies. :( it is very difficult for me to do this.

I know the health risks. I have multiple already.

Sorry - but that is their choice to make. Not yours.

I am sorry that you have found out you have marfans. My dad died in 1985 of an aortic anurysm at the age of 45. 2 years later Marfans was discovered and he ticked all the boxes. Obviously he could not get checked. My brother and I are supposed to go for genetic testing at some point.

[gizmoduckus]

but there is no treatment to prevent it, so there is nothing to do ahead of time.

If your lung collapses, you will know and get treatment regardless of the cause.

Having medical knowledge (a dx of marfans) won't really make a difference with this.
But how many people would put off the symptoms of shortness of breath and pain because they don't want to go to the doctors? I know people who have died from heart attacks because they didn't seek treatment in time.

If you know your medical history then you would seek treatment earlier for any small sign of this. I know because my son has a congenital disease which can make him getting gastro extremely deadly. Because I know this information, I am definitely going to get him treatment for it earlier than what I would of done if I didn't know.

[beebs]

but there is no treatment to prevent it, so there is nothing to do ahead of time.

If your lung collapses, you will know and get treatment regardless of the cause.

Having medical knowledge (a dx of marfans) won't really make a difference with this.

Uh sorry - disagree entirely with this! Completely in every way shape or form. My father was in agony agony dying of an aortic anyrsm - he went to emergency here in inner sydney and they took one look at him and saw he was 45 and obviously assumed that whatever it was was not serious. They sent him home with a bottle of valium and told him to come back in the morning if he was still in pain. He died that night. If you have a DX of marfans the medical profession will take everything that you have very very seriously - you also have regular heart echos and scans to make sure your aorta is strong. And when they pick up a problem it is operable.

Withholding this information from your family is soooo wrong on so many levels and may I say your reasons are just baffling.

[zombiekitty]

but there is no treatment to prevent it, so there is nothing to do ahead of time.

If your lung collapses, you will know and get treatment regardless of the cause.

Having medical knowledge (a dx of marfans) won't really make a difference with this.

I agree. My best friend has Marfans and his lungs collapsed twice before he knew he had it. If your lung collapses you sure will seek medical attention.

[onionskin]

I think you need to explain in detail what Marfans syndrome is.

What they do with that information has absolutely nothing to do with you.

I think this thread would have been better put in the pro-life section.

Another one here baffled by your post and reasons for posting.

[beebs]

Collapsed lung is not the only problem marfans sufferers face there are many many that have signs long before they happen. Aortic problems being one of them. As I said if they did have a dx then the Medical profession would take it very seriously.

This thread is making me feel physically ill. The unbeliavable selfishness.

[sam's mum]

But how many people would put off the symptoms of shortness of breath and pain because they don't want to go to the doctors? I know people who have died from heart attacks because they didn't seek treatment in time.

If you know your medical history then you would seek treatment earlier for any small sign of this. I know because my son has a congenital disease which can make him getting gastro extremely deadly. Because I know this information, I am definitely going to get him treatment for it earlier than what I would of done if I didn't know.

a collapsed lung gives a lot more than shortness of breath though. there is no doubt at all that there is a problem.
DD1 has a tentative diagnosis. The paed has said that it doesn't really mean much for every day life, but that she needs to have an ecg every two years. The cardiologist, being brutally frank, said that if it is her heart that goes there is pretty much nothing that they can do anyway. All they can do is try identify changes in the early stages.

[gizmoduckus]

If you have a DX of marfans the medical profession will take everything that you have very very seriously - you also have regular heart echos and scans to make sure your aorta is strong. And when they pick up a problem it is operable.

I also agree 100% with this. The medical professionals are not infalliable. They can (and have) waste time looking in the wrong place trying to get to the bottom of things. There was only the other day where a young boy died because the triage nurse sent him home with panadol when he needed urgent medical care. If they can be told your medical history to start with, it saves them a lot of time narrowing the tests down to find out what is wrong. Time is critical in an emergency

Sorry to hear about your loss beebs. :hugs:

[zombiekitty]

Collapsed lung is not the only problem marfans sufferers face there are many many that have signs long before they happen. Aortic problems being one of them. As I said if they did have a dx then the Medical profession would take it very seriously.

This thread is making me feel physically ill. The unbeliavable selfishness.

Yes, I am aware of the medical complications marfan syndrome sufferers can face. As I said, my best friend has it. I was just clarifying what Sam's mum said as in if there is something wrong, the sufferer will seek medical attention.

[gizmoduckus]

DD1 has a tentative diagnosis. The paed has said that it doesn't really mean much for every day life, but that she needs to have an ecg every two years. The cardiologist, being brutally frank, said that if it is her heart that goes there is pretty much nothing that they can do anyway. All they can do is try identify changes in the early stages.
I am sorry about your DD's health issues but the question is, would you want to know about it earlier? Isn't that why you are trying to get an diagnosis, so that you know? What would you say if the doctor knew that there was a possibility that your daughter might have it but didn't want to tell you for whatever reason?

In situations like this, the more knowledge you have the better.

[sam's mum]

I am sorry about your DD's health issues but the question is, would you want to know about it earlier? Isn't that why you are trying to get an diagnosis, so that you know? What would you say if the doctor knew that there was a possibility that your daughter might have it but didn't want to tell you for whatever reason?

In situations like this, the more knowledge you have the better.

we weren't actually following up on those issues. We went to a new paed just to get some paperwork filled out for high school and he started from scratch so to speak on everything. that came up as part of his testing. We still aren't chasing it to get a definite dx, the dx doesn't really matter. we just do the echo every 2 years just in case.

[beebs]

Yes, I am aware of the medical complications marfan syndrome sufferers can face. As I said, my best friend has it. I was just clarifying what Sam's mum said as in if there is something wrong, the sufferer will seek medical attention.

Yes - but both you and Sam's mum are basically saying there is no need for a dx because it won't change anything. Or am I getting the complete wrong end of the stick?

All I was saying - is that if someone has a genetic condition and withholds it from their family - that to me sounds crazy. If my brother found out he had a medical condition that was genetic then I would like to know about it. If he withheld the information I'd be furious.

[CazHazKidz]

I can understand that you want to have a whinge about having Marfans, get some sympathy and what not.

I can also understand that you want to have a whinge about all the abortions your family have had in the past. It would upset me a little too.

But to start a thread linking the two together is crazy to me. Your family needs to know what you have learnt about your condition, and that they should be tested. What they do with that information should not be your concern, your concern should be your family.

Also, if they've had so very many abortions in the past, what difference will it make? It's not going to bring any of those babies back, AND I highly doubt it's going to cause them to make that decision again. If they wanted to abort they would obviously do it anyway?

[nothanksbye]

sorry but I cannot believe that anyone would think its ok to with hold medical conditions, and think its very very dangerous to say oh well they would work it out.

What about all the things you can do to make your life better, if you know you have something..

Like you might decide to become really healthy, stop smoking, drinking. Get fit..

You might want to look at life very differently if you know you have something.

I am actually disgusted that anyone would suggest it ok to with hold this.

If I found out anyone knew and didnt tell me, I would sue them.

[One of THOSE mums!]

My cousin has turners syndrome. She was diagnosed very late and now has significant health problems. Marfans syndrome is linked. My uncle was adopted and when he found his biological family they told him they carried the gene.
If he had known perhaps they would have been aware of my cousins illness and she wouldn't be struggling today.
She has heart problems. Sight and hearing problems. Only 1 kidney which is not fully functional. Is extremely short and her limbs are out of proportion. Spacially challenged-she will never be allowed to drive. She never reached puberty and has to take steroids and hormones.

You have to tell your family. It has nothing to do with abortion and everything to do with their right to know.
If u don't tell them they may one day decide to not abort-and not be aware of the medical risks their own children face let alone the risks of marfans.

[gizmoduckus]

we just do the echo every 2 years just in case.
Sorry but this just baffles me. You are doing an echo every 2 years just in case what? By the logic you are using, you should just be waiting for something to happen and then deal with it. These people that she is withholding the information from can use this knowledge to get tests done "just in case" but can't because they have no idea and probably won't until they are in the emergency room.

I am leaving this thread because my stomach is just in knots thinking about how some people would be so careless with information like this. People deserve to know!

[Nowhere]

Hey
I remember looking up marfand syndrome wen we was discussing other conective tissue disorders with miks genetics team as she fits all the profile for EDS and the info for that and marfans come up together, from memory people with marfans syndrome are very tall and very skinny, and have alot if issues with loose joints and skin, as well as the possible lung and cardiac issues so if your bro has this he would likely know, I'm also surprised it's only been picked up with you in your adult years, I can't remember reading Anything About if increasing the risk of cp or turners or asd for that matter but asd wouldn't surprise me that is linked to a lot if late


As as for with holding the info from you siblings because you are pro life and you are concerned if they know they will test future pregnancies and abort that really isn't your decision you can't with hold that from them, my sister is going through OCD right Now and I have given her our genetics drs name and number she has access to all the info on dd as I want her to have as much info as she can, I have already said to her that if gob forbid wen she is preg they tell her that bub will
Be like Mik that I want her to decide what she and her husband feel and think and not take into account our feelings I would hate to see her go through the living hell we have just because she would feel bad for terminating a bubs that like dd, I wouldn't encourage her to abort but I Also wouldn't pressure her to keep
It based on my feelings, in all honesty and in mean thus on the nicest possible way you need to do the same thing, it is not your place to with hold info like this.

To be honest I didn't think there was pre natal tests for marfan syndrome

[Bubbles10]

As there are over 100 known mutations that can cause Marfan syndrome, diagnosis is often based on symptoms rather than genetics. They often don't do genetic testing to look for the mutation.

If a family mutation is not known then prenatal testing would not be available.

I do think it is important for people to share genetic info with their family members, but also respect the individual's right to privacy of their genetic information. The OP says she has let family members know that she has Marfan s and so i don't understand why people are getting so angry with her.

Now they have the name of the condition, her family members are able to get more info and found out how this affects them without involving the OP. The family members right to investigate in their own time must also be respected. Learning of your own risk of disease or potential to pass onto disease can be difficult and should be undertaken when you are ready to do so.

[sam's mum]

Sorry but this just baffles me. You are doing an echo every 2 years just in case what? By the logic you are using, you should just be waiting for something to happen and then deal with it. These people that she is withholding the information from can use this knowledge to get tests done "just in case" but can't because they have no idea and probably won't until they are in the emergency room.

I am leaving this thread because my stomach is just in knots thinking about how some people would be so careless with information like this. People deserve to know!

The echo is in case the connective tissue in her heart is having issues. Getting a dx wouldn't result in any different treatment. It would still be an echo every two years.

As to advising family - I agree that family does need to know about genetic conditions and I disagree that withholding this information would be advisable.

[SassyMummy]

As there are over 100 known mutations that can cause Marfan syndrome, diagnosis is often based on symptoms rather than genetics. They often don't do genetic testing to look for the mutation.

If a family mutation is not known then prenatal testing would not be available.

I do think it is important for people to share genetic info with their family members, but also respect the individual's right to privacy of their genetic information. The OP says she has let family members know that she has Marfan s and so i don't understand why people are getting so angry with her.

Now they have the name of the condition, her family members are able to get more info and found out how this affects them without involving the OP. The family members right to investigate in their own time must also be respected. Learning of your own risk of disease or potential to pass onto disease can be difficult and should be undertaken when you are ready to do so.

Yeah, okay, fair enough... but what is the point of the thread then?

[Bubbles10]

Yeah, okay, fair enough... but what is the point of the thread then?

Not sure! :wave:

[beebs]

Yeah, okay, fair enough... but what is the point of the thread then?

It was more about her withholding important medical information to push her own anti abortion agenda which angered me. But as sassymummy says - what is the point of the thread? bleh.

[SassyMummy]

It initially sounded like the OP was unsure whether or not to pass on important information because of the whole abortion thing... and that made sense I guess, even if I didn't agree.

But now, it sounds as if she has no intent to tell them anyway, and her mind was made up before even posting... so I'm just not sure what the point even is, other than to perhaps come across as very callous (but then, why do that either?).

[delirium]

I think it would be very wrong of you to keep information that could be important for them to know just so you can push your agenda in regards to abortion.



Yep, I'm with you sassy. Anyone that knows me knows I dislike abortion. But mine and your feelings on the subject OP, really shouldn't have a bearing on you telling your family. It is not your place to withold very important family information bc they may abort, that is their decision alone. You just can't do that for your own agenda :no: If they want to abort that is their business not yours. I hope that doesn't come across too short :o

[luvmyboys]

I'm not sure what the point of the thread is and most of the replies to be honest, the op has told her family she has marfans, the rest is up to them. If my sister came and told me that I'd be finding out as much as I could.

[Jakois]

I'm not sure what the point of the thread is and most of the replies to be honest, the op has told her family she has marfans, the rest is up to them. If my sister came and told me that I'd be finding out as much as I could.

Totally unacceptable. If you have information about a genetic disorder you should feel obligated to pass on as much as you know to those that could be affected. Imagine if your doctor gave you a diagnosis and then told you to research it yourself.

Morally you should do the right thing and tell those who may be affected. [text deleted by moderator]

[luvmyboys]

But she's not a dr.......and it sounds like she's a little confused herself

[Nowhere]

I'm not sure what the point of the thread is and most of the replies to be honest, the op has told her family she has marfans, the rest is up to them. If my sister came and told me that I'd be finding out as much as I could.

Well this is a failry heavy thing to post about, it has the ability to tug on heart strings as do some other things that the OP posts, People are going to respond.

You know really this thread has it all, abortion debate, ethics debate, discusion of chromosone issues, and familuy dramas, Its going to get responses and its all stuff that not every one will agree with each other, Really the OP couldnt of planned it better than packing it into one tiny packege. :)

Jokes aside its a sh*ty situation, I get that, Its something we have had to think about with having more babies in teh future, its discusions I have had with my own sister, Its not a nice conversation but its one that needs to be had. Something situations suck and cant help but cause ripples but the best we can do is try and avoid as much knoch on damage as we can by being informed and letting others it may effect be informed.

Im surprised that your sister and brother have not been ofered genetic testing for them selfs I know my sister has been offered testing for X link disorders seen as im a carrier and DD has a x linked ratio that is significantly skewed so alot of X chromys are switched of, She also has a unspecific mitochondrial disorder and obviously thart is something never far from my sisters mind while doing IVF, if i could tell her the exact thing they need to check for I would tell her with out a hesitation, and same goes if i got pregent again if i could check for DDs condition I would also check, It doesnt mean that we would terminite or we wouldnt but we would have the right to check if we knew, You know what defect you carry and you kno what defect your brother and sister cary, It is your duty it is your ethical responsibility to inform them, How the heck could you now and then potenitaly see there heart break in a few years time while they stand at there kids bed side hooked up to machines and moniters, all the time KNOWING that you denied them the chance to know what they could be facing denying them the chance to come to terms with it, before disaster struck.

I know all to well the absolute hell it is to watch your child suffer and not know why not know the cause, I can tell you right now, If a family memeber came into me and said Oh byt the way I knew this could of happened i know what she has, I would smack them in the mouth, I am not a violent person but I can not for the life of me see or understand how anyone would with hold such information from there enemy let alone there own flesh and blood.

Please I beg of you if you have any compassion at all, do the right thing and tell them what they need to be aware of if you cant bring your self to do so, then speak to the genetics dr and get them to.

[Nomsie]

Closed for review.