Hi Katrina,
Good to hear from you! Yes, one of the tofs council members, Graham Slater is also over 50.

Tell me are you nursing in the the community? Would you be interested in talking to the media about your experiences of being a tof and a paediatric nurse? We are aiming to publicise the condition, TOFs organisation and the conference by talking to various newspaper health journalists and parenting magazines.

We are trying to find a venue to have the conference.
How are you?
Take care and best wishes
Sophie

Hi All - I am a newbey on here too.  My name is Tracey and I am 39.  I was born with long gap OA and have also had a bowel transplant reposition.  I am pretty healthy now and live with my family in Worcestershire and would love to come to the meet in Oct.

I had all of my work done by Mr K Roberts and Mr S Corkery at Birmingham Children’s Hospital.  I have never met anyone who has had the same as me but have spoken to some Mum’s on Extra Special families about my own experiences and how I have coped but more importantly trying to ease their minds byt suggesting that there is no proven hereditory link with what we have and passing it on to our children.  I am the only one in my family with this condition and I have looked back into the family history and found nothing so far!

I have three healthy children with no problems thank God and although I had to have 3 Caesarean Sections because of my other problems again they were all non symptomatic.

Well hope to speak to other adult OA’s especially women.

Tracey

Hi Tracey,
It is great to hear from you! How old are your children? I am so pleased that you will coming to the conference. It is to be at the grimstock hotel near the NEC on saturday 16th October. Because many of us will have to travel some will be staying in the hotel the night before and will be gathering to have dinner on the friday. If you can come to the dinner, even if you are not staying the night, it will be great to see you there. The day itself will cost £20 per person.

There are a number of female adult members on line. We tend you chat on Face Book. If you go to facebook and then search for Tofs you should come across it.
I hope all is well. When is your birthday? I’m 40 in October.
Speak soon,
Sophie

Hi, I’m the doctor mentioned in an earlier post who was at the last conference. I think there’s a lot of people who had health problems in childhood who go into healthcare because it’s what they’ve seen most of- like how a lot of kids want to be teachers because they see them at school. If I was to wax psychological about it I wonder about going into healthcare to get some of the power back as well!

My first memories come from going to the doctor when I was three with coughing, and my mum being told to not let me sleep on my back. I also remember sitting in a car aged seven with the acid taste in my mouth and having chest physio at about the same time. I escaped a lot of hospital intervention as we moved around a lot when I was small and lost touch with Miss Kapila in Nottingham. Having said that, I’m not sure they really knew what the long term effects were then anyway. I remember as a medical student asking one of the paediatric surgeons what the long term effects were (and this would be about 1997) to be told there were none- I was hoping for some explanation about my chest problems, but they were still pleading ignorance then!

It’s interesting to here about the thyroid cancer (though not for you- hope you’re ok). I have wondered about the amount of radiation I’ve had- I’ve had a bunch of CTs in the last few years alone. I guess we all have to keep an eye out for that as well as sarcomas and other radiation induced nasties.

I’m keen to come to the conference- if it is to be down south can I request somewhere with good train service as it’s too far for me to drive. London’s ok for that and Birmingham, as most places do straight trains but Brighton would be a hassle from York.

I’ve tried to sum up questions from the various posts so hope its not confusing!

Dear all,
Great so see so much interest in the adult conference.  I know you’ve got some of the details already,(it’s on the news section on the front page of our site and Facebook) but in case some of you come directly to the forum here it is again!  Do get your booking in soon because we’re filling up already.  We welcome any suggestions for content - even just things you’d like to see discussed - just get them in quick because the planning is gathering momentum.  Email us (.(JavaScript must be enabled to view this email address)) with your suggestions.  Here’s the details:

Book NOW for our first-ever ADULT conference
Saturday 16 October, The Grimstock Hotel, Coleshill B46 1LJ (5 minutes from NEC, junction off M6 and M42)

Are you an adult with TOF/OA, a relative, health care professional, or will your TOF teenager soon be making the transition to Adult Care?</strong>  If so, this conference is for YOU!

Speakers include:
Mr Duffy - Consultant Thoracic Surgeon, QMC Nottingham
Prof Morice - Head of Cardiovascular and Respiratory Studies, University of Hull

Our host for the day is TOFS patron Miss Leela Kapila, OBE, FRCS

We are delighted to have Mr John black, President of the Royal College of Surgeons in attendance.
Cost is £20 per person, including lunch and refreshments.
Please book early, spaces are limited, call TOFS today on 0115 961 3092.

Look forward to meeting you, very best wishes,
Diane

I’m a 47 year old adult TOF, long gap, colonic interposition done by Mr. Waterston in 1963 at GOSH, reworked at Edinburgh Royal Infirmary in 1989. I used to post to the Yahoo group when it was active. I’m interested in this conference but am obviously not going to make it to the UK for a one day conference - any chance of a Skype video connection?

Thanks
Gary Spiers
Pasadena, CA

Hello Gary,
Thanks for your posting.  This is an interesting idea.  We’re having a conference meeting next Tuesday 17th August - let me look into it and I’ll come back to you.
Many thanks,
Diane Stephens
Office Manager
TOFS

Hi Diane,

What was the outcome of this? I realized that with the time difference this conference would be 1:30AM to 9AM my local time.

Thanks
Gary

Hello Gary,
Thanks for your posting.  Sorry it’s taken me a wee while to come back to you. 

I don’t think they think a Skype connection will work (sorry - I’m not that tech-savvy so don’t really understand all this - so please correct us if we’re wrong) - but perhaps we can get it recorded?

I’ll email you soon as I have a better idea.

Many thanks for your patience.
Diane

Hi guys,
I know this is a new topic - but I want you folk to see it so I’m slipping it in here - apologies for the cheating!

TOF ADULT GET-TOGETHER HAPPENING SOON - Book now! 

Calling all Adult TOFS - or are you a teenager who might be interested in meeting other ‘older’ TOFs?  If so please book now for our TOF ADULT GET-TOGETHER in Worchestershire’s Hidden Garden at Bodenham Arboretum and Visitor Centre, Wolverley, Kidderminster in Worcestershire DY11 5TB.  Thursday 15 September from 5.30 - 9pm.  (We will enjoy a 2-course supper in the restaurant at 7pm.)  The supper will be subsidised by TOFS for the TOF Adults and Teenagers (partners/additional family members to pay for themselves please).  If you decide to make a day of it, you could visit the Arboretum, open from 11am, cost £6.50, and join us for supper.  Please email full names etc for your booking now to: .(JavaScript must be enabled to view this email address)

Thank you
Diane