News from the TSSS

Sharing information for better understanding of heart and fertility risks in TS
Saturday 8 March 2025
at Golden Jubilee Conference Hotel, Beardmore Street. Clydebank, Glasgow, G81 4SA

An Education Day open to all Healthcare Professionals involved in the care of girls or women with Turner Syndrome [TS].

A Turner Syndrome Seminar Day on Heart and Fertility Risks in TS is open to adults with TS, their partners and families. Teens with TS may attend if they are fully informed of all implications of a TS diagnosis. Please note we are not able to provide any childcare facilities.

The Turner Syndrome Support Society [UK] is proud to be hosting this event. This is a day that was planned for the 10th Turner Syndrome International Conference [TSI2020], but it had to be cancelled because of the pandemic. Our Clinical Advisory Board helped plan the “Meet the Expert Education Day” and some of those expert speakers have agreed to talk to families at our seminar day. We are pleased to confirm we have some wonderful speakers attending. The theme for this TS Seminar Day is Sharing information for better understanding of heart and fertility risks in TS.

All too often, we hear about girls and ladies with TS having to make choices regarding heart healthcare, treatment, and surgery. This can often have implications for their fertility options, requiring the girls, ladies, and their families to make complex decisions affecting their future health. Both healthcare professionals and families want the best for their patients. We thought bringing families and experts together to discuss the latest research findings and clinic experiences from different countries would be beneficial.

A full-day information programme

An opportunity to hear from heart, fertility, and endocrine experts with TS knowledge to share and we will hear personal stories from individuals who have TS. Places are limited so booking early is advised. Booking closes by 5 March 2025.

The cost is £30 per person, it includes refreshments, lunch and the seminar. If the price is prohibitive, please e-mail Arlene.

If you have any questions, please e-mail This email address is being protected from spambots. You need JavaScript enabled to view it.

PROGRAMME

TIME TITLE SPEAKER
09:00 - 09:30 Arrival refreshments in the Central Plaza and Registration Arcoona1
09:30 - 09:40 Introduction and Information Arlene Smyth – Executive Officer TSSS UK
09:40 - 09:50 Welcome Prof Melanie Davies – Patron TSSS UK

Morning Speakers: Prof Melanie Davies, Ass Prof Anne Shakkebaek, Dr Helen Turner, Dr Liz Orchard, Sr Emma Weingart, Mr Ed Peng, Dr Amanda Hunter, Dr Lorna Swan, Mrs Caroline Marquis and Mrs Courtnay Cauldwell

Adult Session 1 – Adult Cardiac Care, Adult Experts share their knowledge on adult care, BP and Cardiac management, followed by discussion on risks, benefits and complications.
Chairperson: Dr Marie Freel

09:50 - 10:00 International Guidelines updates on BP and Cardiac care Prof Melanie Davies (London)
10:00 - 10:10 Personal experience of recent valve replacement surgery. Mrs Caroline Marquis
10:10 - 10:20 Care and treatment of BP, aortic risk in a TS patient Dr Liz Orchard (Oxford)
10:20 - 10:30 Self-care in patient with TS BP monitoring,
health and wellbeing, cardiac alert card.
Sr Emma Weingart (Oxford)
10:30 - 10:40 Morning Refreshments in the Central Plazza
10:40 - 10:50 Genetic aspects in cardiovascular disease in TS Ass Prof Anne Shakkebaek (Denmark)
10:50 - 11:00 Coping with pre-surgery anxiety Dr Sarah Scott (Oxford)
11:00 - 11.30 Questions, discussions on risks, benefits, complications and research needs. Dr Marie Freel (Glasgow)

Adult Session 2- Pregnancy and fertility perseveration, an update on international access to fertility preservation and options on pregnancy care, followed by discussion on risks, benefits and complications.
Chairperson: Prof Melanie Davies

11:30 - 11:40 Personal experience of donor egg fertility treatment. Mrs Courtnay Cauldwell
11:40 - 11:50 TBC TBC
11:50 - 12:00 Experience form largest TS clinic, hopes for
the future, risks and complications.
Prof Melanie Davies (London)
12:00 - 12:30 Questions, discussions on risks, benefits,
complications and research needs.
Prof Melanie Davies (London)
12:30 - 13:30 Lunch in the Beardmore

Afternoon Speakers: Dr Tony Hulse, Dr Caroline Brain, Dr Alene Shantsila, Dr Aparna Astry, Prof Melanie Davies.

Paediatric Session 1 – Paediatric cardiac experts will share their knowledge on what to look for to diagnose and treat BP and cardiac care in TS early. How to prepare families on risks. Followed by discussions on risks, benefits and complications.
Chairperson: Dr Tony Hulse

14:00 - 14:10 How to monitor and improve cardiovascular health in paediatric TS. Dr Alene (Helen) Shantsila (London)
14:10 - 14:20 Cardiac care within TS paediatric clinics. Dr Caroline Brain (London)
14:20 - 14:30 Patient Experience Val and Kacey Arlene Smyth
14:30 - 15:00 Questions, discussions on risks, benefits,
complications and research needs.
Dr Tony Hulse (London)
15:00 - 15:30 Afternoon refreshments in the Central Plazza

Paediatric session 2 – Optimal induction of puberty will be discussed, along with the impact on potential< fertility. There will be a discussion on current treatment options and the prognosis for girls with TS now and in the future on risks, benefits and complications.
Chairperson: Prof Melanie Davies

15:30 - 15:40 Optimum pubertal induction in TS Dr Caroline Brain (London)
15:40 - 15:50 Transition to adult care Dr Aparna Sastry (Glasgow)
15:50 - 16:00 Egg and ovary preservation the future Prof Melanie Davies (London)
16:00 - 16.30 Questions, discussions on risks, benefits,
complications and research needs.
Prof Melanie Davies (London)
16:30 - 16:40 Thank you Arlene Smyth
16:40 - 16:50 Closing remarks Dr Tony Hulse

The venue