Sue's Clinic - 14th April @ GOS???

[Phii_x]

@mobilemum I start the week before your daughter! It seems weird that you start on a tuesday? My timetable covers the bank holiday monday. Maybe you should call to find out?

@jojackson Thank you for that I know that there is a pretty high chance of someone being close to my age

Just a note - Today I got a copy of a letter that prof G sent to my GP. Apparently I have marfanoid habitus? They never told me about this at my appointment so I don't really know what it is, could someone explain? I believe I read about it being heart conditions and sudden deaths? Which they did ask about at the appointment because a few people on my mom's side of the family have died very suddenly and young of heart conditions. And also long limbs? The letter says my arm span to height ratio is on the very highest level of normal. So it looks like I will be getting a echocardiogram whilst I am there.

- Fiona

[Blaadyblah]

Hi, if you pop marfanoid habitus or marfans into the search box it'll bring up the relevant topics. There's a close relationship between the various connective disorders - Marfans is one of them and can have heart complications (as can EDSIV) so they'll be wanting to check which you have in case it makes a difference to treatment.

There are lots of people with EDS/HMS who have marfanoid habitus but not Marfans though. Also plenty in the general population - my OH has marfanoid habitus, but apart from asthma there's nothing wrong with him at all, so don't panic too much!

[jojackson]

Marfanoid habitus just refers to your arm span in relation to your height, i.e. your arm span is longer than your height. It doesn't necessarily mean that you have Marfan syndrome, and is quite common, especially in people with connective tissue disorders.

[Phii_x]

Ah ok I'll go search it after this

The only reason I'm worried is because yesterday we found out that my mothers cousin died of Hypertrophic Cardiomyopathy, which is where the heart muscle thickens. A few people were tested on that side of the family after he died and quite a few came back with results showing they had it.

I'm praying that I don't have it, or that they atleast find it and can control it.

[MandyG]

Hope Kim doesn't mind me posting here

Pops is in gosh now and in a bad way

everyone is praying for her and hope she has some good news soon

My thoughts and prayers are always with kim and her family

xxxx

[alison1984]

just wondered if any one else on here is booked in for the physio sessions from the 18th oct onwards?
we will be going up with my middle daughter who will be 5, although we have been before with my eldest dughter last year.

[barkingmad]

Nope not me but I may try to delay Tasha's reviews until then as they are due on 31st August but its a bit close to the Residential Weekend,. so if I change it they will be looking at a booking around then, if they do book her in for a review during that time we can meet for coffee!

[alison1984]

that sounds cool, keep me posted when you get your appointment x

[christianne]

Hi
Ewan (12) is going for his second 2 weeker at GOSH from the 6th September (he did it 3 years ago but has deteriorated loads recently). I was wondering if anyone else is going around then?
Christianne

[christianne]

I guess not then! Never mind, there will surely be some nice friendly people there as usual. A friend of Ewan's, a girl of 12 with HMS, is coming, the second of Ewan's two weeks is her 1st week so they will overlap. Just wondered if any faces there will be names familiar to me from the boards. Unfortunately the residential weekend is in the middle of his 2 weeks so I won't be able to go to that, I am disappointed as it looks like being an interesting one and I have never been.Oh well next year maybe...
Christianne.

[princess]

Hi we are at Gosh May 3rd with our eldest 10,7 for first time, is anyone else there? The thing is I have POTS and eds and my husband is my carer and we also have a 3yr old so we are all coming. We were told by Sue they would try and get a flat for us but then we were told we have two rooms and my husband and I are in seprerate ones. I have nightime issues with the POTS and need him with me. They are trying to arrange a flat, but if they do what is that like please?. DOes it have shared facilities bathroom , kitchen etc?
Thank you so so much for your help, getting quite stressed .
Jai

[christianne]

Hi Princess
i wanted to reply to your post , i am afraid I haven't stayed in a flat but I have stayed twice for a fortnight on the rooms. THe rooms have en-suite bathrooms so i am sure the flat will have its own bathroom, and maybe a kitchenette. If not a kitchen then there is a small fridge in each room , enough to store medicine and a pint of milk or a couple of cans of drink. there is a kitchen and dining room at the end of each corridor, not far at all.It would be worth you ringing up and speaking to the patient hotel to see if there is any chance of a flat, or otherwise if there is any way you can be put in rooms next to each other. In the rooms there are two beds and another bed that swings out from underneath one of them. I can't see why you couldn't all sleep in the one room,(unofficially) even if it means bringing in a mattress from the other room into the one you will share, and having the little one sleep on the mattress on the floor, while the ten year old sleeps on the swing out bed and you and your hubby have the two single beds.... Just a thought
Christianne.

[helencatlady]

Hi,
Im Helen and we are going for the first time on 31st May. My son is called Elliot and he is 14, he is also bit worried about the rehab. (actually prob. more so about being separated from his xbox live for 2 weeks!!!) so Im hoping you will get on well being a similar age. Could you send us a message back taa, Helen.

[lukesmum]

Hi monkeymomo we are checking in today ( jan 29th ) for a 2 week stay, Luke is 8 and this is our 1st time , hope to see you there very nervous

[lukesmum]

Well the day is here, still not packed, didn't sleep and leaving in 4 hours, upppps, anyone else booked in for a 2 week physio see you there ( if I ever make it )