I feel like talking about Marfan and how SH*T it all is

[marfanregular]

Anyone else out there suffering from Marfan?

I've lived with it for more than 20 years and I'm only just coming to terms with all the sh*t it's caused in my life.

I feel the need to share with someone... Anyone want to join in a therapeutic and anonymous complain-and-get-it-all-off-your-(pigeon)-chest session?

no-one?

I know a family effected by this disease, and yes it is shit, and it doesn't help that no one knows what it is either.

Not a sufferer but I know what it is and yes it is rubbish - and very scary. Hope you get some complainers here to join you soon!

Hellooo and thanks for your replies, belgo and Northern. Didn't really want to go into explaining it all (and somehow expected that no-one in their right mind would open up a thread with "Marfan" in the title if they didn't know what it was - thanks for perservering!) but here is a link to one of many Marfan websites on the internet.

The fact that I've posted in Health when not everyone knows what it is, is a bit of a discussion point in itself... see this thread!

Hello mf - I don't suffer from Marfan's myself but do know what it is. I have a child with significant heart problems so have a tiny insight into that side of things. Complain away, tell us your sh*t.

marfanregular - I am waiting atm for an appointment to come through to have my dc's tested for marfan ... It has been suggested that my dh had suffered from it - could I help at all?

Hello Saggar, you were on the other thread, weren't you? I FEEL like sh*t but am hopefully not entirely made of same said substance.

Well, where do I start...? (Shall keep very detailed facts out of this to avoid detection! am name-changing regular)

Crap eyesight: tick
Tall and lanky: tick
Aorta that needs checking annually: tick
Diagnosis at a young age after the death of a parent: tick
No bloody counselling or psychological help for any of us after diagnosis: tick
Teased at school because of tall-and-lankiness oh and thick glasses: tick
Crap self-image even now because of it: tick

shall I go on...?

Mummy2TandF, I saw your thread about your husband just now when searching for Marfan to find the appropriate place for this thread... What an awful shock for you. (Approximately what happened with us 20 years ago.) How long have you had to wait for an appointment? How are you coping?

Perhaps you shouldn't be reading my depressing list of annoying symptoms...? It's good to be prepared but I don't want to depress you before you've even got to the hospital... One positive thing: at least they've decided to test your DC's - ignorance is definitely not bliss in this case, as you already know . Fingers crossed that they can give a definite diagnosis so you know where you are, iyswim.

I mean "definite diagnosis either way", obviously, not that they definitely have Marfan

I don't have any direct experience but know enough to know that you are within your rights to have a rant about how shit it all is!

Sympathy and love

I have a very good friend with this and yes, it is shit.

Sorry it's so hard, hopefully someone with direct experience can come and chat with you.

Thanks guys

Don't worry about talking about it ... believe me I probably know more than the experts ATM, since August all I have been doing is reading up on it, am now a member of the Marfan Association UK and am currently arranging a sponsored walk and family fun day in memory of my husband with half of the proceeds going to the Marfan Association. I am lucky (if you can call it that) that I have found a consultant that is prepared to test the dc's ... my G.P shrugged me off as a nuerotic(sp?) Mummy!!

hello marfanregular - yes, I have heard of Marfan,saw a poster when ds was at hospital and then looked it up on the internet...just wanted to say hello

Mummy2TandF the dismissal of the "neurotic mother" is EXACTLY what my Mum got, too. Keep persevering!

Will you be seeing Dr Child in London btw? She is VERY good and absolutely lovely to boot

hello maryann, thanks!

Sorry about your parent mf

The counselling/psych stuff gets my goat actually. There have been times when dd has definitely needed that sort of help. The emotional issues that accompany chronic health problems are massively overlooked IME. The help is there (well it is these days if you ask for it) but it's not oddered as part and parcel of the diagnosis as it should be.

Yes it is Dr Child - she emailed me the other day and we are just waiting for the appt to come through ... she has also offered to look at pics of my DH and give her opinion on whether he did have Marfan or not - it is all still a bit up in the air atm. If you don't mind me asking was it your Dad that died? Was it of marfan? And was he diagnosed before death?

oddered?? offered

Thanks Saggar. Was a loooong time ago but is now all rearing its ugly head again. In fact if we'd had the slightest bit of help/counselling (and including the same for our parent who was the one left behind to look after x children) then I'm convinced I would have been much better placed to deal with all the sh*t which comes with a) being diagnosed and then b) putting up with the fact that you're never going to one of the "normal" children at school. For example.

How old is your dd?

ah... OK I will come clean, yes it was my dad who died, of an aortic aneurysm caused by Marfan, and no he wasn't diagnosed before death. Which makes it even more frustrating/upsetting. (So I know where you're coming from with your DH )

Very glad to hear you're going to see Dr Child, though, as she is absolutely the BEST in the business (iyswim). And really, really lovely (a youngish granny type, in a way) so your dc's won't be seeing some gruff middle-aged man with no concept of a bedside manner.

How old are your dc's, then?

She's 14 so teenage rebellion has reared it's ugly pretty little head. Do you have children? Are they OK?

No, no children yet... the whole subject of children is in fact the reason why this is all rearing its ugly head right now. 50% chance of passing it on etc. We're going to try for IVF with PGD (Pre-implantation Genetic Diagnosis iirc) in the next 12 months, actually. So, a hot topic!

mmhh 14, that's a tricky age... does your dd have any outward signs of problems or is it all internal? How does she feel about having the heart problems? Does she resent it / ignore it / deny it?

sorry for not replying earlier ... am sorry to hear about your Dad - thst is why they won't give a definate diagnosis for DH as Marfan because he didn't have an aortic dissection, they seem to think that he had it but obviously it was undiagnosed but that it didn't cause his death ... my dc's are now 3.7 and 19 months.

Hi mf

(and Mummy2)

My sympathies to you both.

My DS has an (as yet unknown) connective tissue disorder with stretchy translucent skin, low muscle tone, weak joints, poor posture and a heart valve/aorta issue. My Father and Grandfather both died from aortic aneurisms - my Father whilst having a repair done, they had spotted it when he was having scans for cancer (he had non-hodkinsons lymphoma).

At my DS' last genetic appt my geneticist recommended that I have a heart scan and MRI to rule out any future problems for me.

I have read quite a bit about Marfan's whilst researching what may be up with DS, so much so when they had a case on Holby City (or casualty) a while back I'd dx'd it before they did!