Anyone have experience of marfan syndrome?

fannyannie_2

Hello everyone

Please feel free to move if i'm putting this in the wrong place!

My ex has been diagnosed with marfans syndrome after he had a collapsed lung. So i took my son to the docs after i had read up on it because it can be genetic. He's had an appointment at the hospital to which the doctor said she's not overly worried about him having it but is referring him for a blood test which will give us a definate yes or no. Does anyone know anything about this blood test?

I'd love to hear other peoples experiences with the syndrome.

My main question is that if he is diagnosed with it and has to attend regular hospital appointments would there be any help i can get with travel expenses? Were are on working tax credits at the moment. The hospital is 2 buses there and 2 buses back which will cost around £15 each time.

Thanks in advance for your replys :beer:

nikaso

I used to support a young man (26 yrs old) with Marfan's syndrome, he had mild/moderate learning difficulties and certainly did receive DLA and his travel expenses came out of that I believe. I'm not sure if the benefits were related to Marfan's or the fact he had learning difficulties however!

Don't the hospital have a patient transport service or something?

Bree

No experience of marfans syndrome, other than our gp thought our eldest dd might have had it. She saw a specialist who said that she did'nt have it. So of no help there I'm afraid.
But I did spend last night in hospital with one of my younger dd's who was having a sleep study. I was reading one of the notice boards and one poster did say that you could claim for help with travel costs if you where on wtc/ctc,. It would certainly be worth your while giving the hospital a ring, and asking.

tom9980

I once saw Professor Farndon i think it was to see if i had Marfans Syndrome about 10 years ago because i seemed to have most of the symptoms luckily he said i didnt.

More information can be found here on wikipedia.

Savvy_Sue

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shadej

My husband has marfans syndrome. Though he is very healthy.
His mother and brothers and sister all have it to. They are all healthy accept for his younger brother who died three years ago. I'm must say that his younger brother had severe learning problems as well as health problems. His other brother and sister have moderate learning disabilities. As marfans syndrome is genetic in the first few years of our relationship it had put me of wanting to have a child with him. I have since changed my mind. He has a 6 year old child who does not have marfans syndrome but does have mild learning disabilities. My husband goes to the hospital every couple of years to check on his heart but other than that is is fine and happy. Though he is a few penny's short of a shiling.hehe.
The hospital have a form you can use to claim the travel cost back from the council.
If he is diagnosed then chances are he will lead a normal live with minimal visits to the hospital. If I can help any more then let me know.

Dobiesmon

Hi
My son has Marfan syndrome as well as moderate learning disabilities he is 27 does not work , he gets dla incapacity benefit and a free bus pass , I am his reg carer

Jojo_the_Tightfisted

The ex has it (although he won't admit it to his current partner or the insurers for his mortgage - hey, not my problem any more) but has had 3 collapsed lungs following intense exercise, problems with his ankle and knees and his eyesight is pretty rubbish (all related, apparently). He also has a heart roughly the size of a melon - but he's built like a brick outhouse and is very, very strong. He may be a pain in the butt, but he doesn't have any learning disabilities - as I understand it, Marfan's affects the connective tissues in the body rather than the brain - which means his acting particularly obtuse is just him being himself!

A few hospital visits here and there probably won't break the bank - my local hospital provides the price of a bus ride to those on income support - unfortunately, to get to the cashiers' office, you have to travel through the back of the disused Victorian wing, past the acute psychological service, the addicts' treatment offices and the Genitourinary Clinic! Then, there has to be someone there prepared to come to the window and authorised to issue funds, between the hours of 12 and 2.30, not counting an hour for lunch and dependent upon the provision of benefits award letters dated within the last 6 weeks, the original tickets and there being enough change in the drawer.

It's easier to just absorb the cost, and many people who require regular treatment qualify for the disabled person's freedom pass, obtainable through your local council. I suspect your DS won't qualify for this anyway.

My DD wasn't even put in for the test, as she is average height for her age (even if she is the weight of a child four years younger and has very long, gangly legs that look like pieces of string with knots tied in the middle!) and they felt her tiny build was just good luck on her part. Think it's just looking for a genetic marker anyway, and unless she shows any signs of developing Marfanoid features, there didn't seem much point in putting us through it.

fannyannie_2

Hi, thanks for all your replys, you've been very helpfull.

I think i was just worried that if he does have it he would have to go up once a week or something but that was just me thinking the worst.

He shows all the physical signs of it apart from not being tall, he's average. I have no concerns with behaviour or his learning, he's top in all his subjects. His arm span is longer than average, he has flat feet and abnoramally long fingers and toes. His joints are very flexible and he has crowded teeth. He's had a heart xray which was fine but she said that wouldnt show up any underlying problems.

The main thing i'm worried about though is the pains he gets in his joints. He wakes me up in the night complaining, we have told him that there growing pains. The doc said it might be due to the marfans or might be because his limbs are skinny and long and there put under extra pressure in his everyday activities. I must admit it scares the c**p out of me!

Thanks again, your all wonderfull xx

shadej

fannyannie wrote: »

His arm span is longer than average, he has flat feet and abnoramally long fingers and toes. His joints are very flexible and he has crowded teeth.

My husband is like that and has a very droopy face and as someone said eariler bad eye sight. Sounds like he may have it in a mild form but please dont worry as most with it live normal lives with very little medical needs. When will you get your results?

Penny_Watcher

My step-son has Marfans. He has no learning difficulties. He's very tall (probably 6'6") and has problems with his feet. Also he takes beta blockers for his heart.

Other than that he's fit, healthy and happy.