mafran disease

[debsoutho]

My partners family are all tall, but his son is towering above them all, according to my partners ex wife he has mafrans disease. He can also be very clumsy and sometimes doesnt seem to think what he is doing.He doesnt do anything around the house. Is this part of the disease. he doesnt go for regular check ups and does everything that a normal teenager does (hes 18). Personally I think he is laying it on a bit .

[suzi-q]

No teenager wants to do jobs round the house. But I think they should have a couple of jobs that are their responsibility, things that are well within their capability which you will know. For instance, if hes a bit clumsy maybe emptying the dishwasher is not a good idea but perhaps he could be responsible for doing his own washing and ironing? My 18 yr old quite happily does this and he works full time.
Not sure what Mafrans disease is, but hes sure to have a bit of the kevin syndrome in him at this age!

[beryllium]

The disease is called Marfans, and it affects the retinas of the eyes, their heart and lengthening of the bones, particularly their hands. A friend of mines daughter has it and she's doing well.

http://www.bsped.org.uk/patients/nick/MARFAN.h tm

[Ethel]

Read all about it here:

http://www.kidneeds.com/diagnostic_categories/ articles/Marfan_syndrome.htm

It's not something that you can 'put on' or make up. You either have it or you don't.

Most 18 year olds do very little around the house, and many are clumsy, especially if they have had a growth spurt.

As the disease is genetic, you need to be sure that your partner is not affected before you consider having any children with him.

[beryllium]

http://www.marfan.org.uk/images/marfan/simon.g if

this shows a picture of a sufferer....

[debsoutho]

Its where you bones keep growing. He is 18 and already about 6 foot 11 and still growing!!! He may well have Mafrans disease but does it have any link to being clumpsy and a bit on the slow side? I just think he is making the most of it, His parents would always do everything for him.......

[beryllium]

I would suggest that your partner or the boys mother read up thoroughly on this syndrome. If there is the remotest chance he has this, then a specialist should be sought. His heart could be at risk.

So, regardless of your opinions on his 'laziness', who gave the diagnosis of Marfans?

[mazie]

My Sister lost her husband to this, he was 36 and they didn't know he had Marfans, until it was too late. He was tall about 6 4 but never had illness so never went to see the Doctor. He got terrible chest pains, they rush him to hospital but his Aorta burst :o(

Please make sure he goes for regular check up

[debsoutho]

apparently he was diagonsed when he was little. Obviusly by a doctor or hospital. This is what I cant work out, surely he has to be kept a close eye on, its not something that the lad is going to grow out of. If he doesnt do anything and is asked umpteen times my partner says Thats Graham all over, his Mum said its cos he has Mafrans!!! and then my partner will do it for him, or just say forget it I-ll do it myself, If he is playing it ip hes not going to take me for a mug, but obviusly I want to check first!!!!!

[Kay]

debshoutho, Surely the lad was allocated a care worker when he was assessed and diagnosed? He really should be having a check up every 6 months or sometime every 12 months. Just reading Mazie's post should validate that love. He really needs those regular check ups. Kay.

[beryllium]

oh, debs you're really gonna have to work on this one and get him seen. It's too serious to be just left....

So sorry to hear of your sisters husband passing away maizie

[mazie]

thank you. It was 7 years ago in September, was such a nightmare and so unexpected. They Children both have to have 12 monthly check-ups. According to the doctors that tried to save him the heart tissue becomes very thin and can rupture

[joko]

debsoutho - it is MAR FAN, not MAF RAN, which may be why you are having no luck finding stuff on google about symptoms

[mazie]

debs, here's a link

http://www.bbc.co.uk/health/conditions/marfan1 .shtml