HHT Families Came Together on May 6th, 2023
HHT Ireland was delighted to hold our 2023 Annual Patient Forum on Saturday 6th May, 2023.
The event took place in the Maldron Hotel, Portlaoise and was a hybrid event, with many people attending via Zoom!
Kick off was 10.30am, with a light lunch served for all who attended.
The main ‘attraction’ was the wonderful Dr Sol Marcos, ENT at Fundación Alcorcón University Hospital, Madrid.
Dr Sol presented on the topic of Sclerotherapy which is a treatment for the nose of those patients who suffer constant and recurring nosebleeds. It is hoped that someday this service will be available here in Ireland.
Link to Dr Sol’s presentation – HERE
Next up was Michael MacGinty who shared his own personal journey of HHT & Sclerotherapy. Michael, along with several other Irish patients , has travelled to Madrid to receive this treatment by Dr Sol. He was able to answer the many questions put to him and it is hoped that many others will follow in his footsteps to Madrid!
Link to Michael’s presentation – HERE
Jacinta Byrne, Clinical Midwife Manager, Mayo University Hospital was next to present – HHT & Pregnancy. This was a topic not yet covered at our Patient Fora. Via Zoom, Jacinta covered all the aspects of pregnancy that might be experienced by our HHT patients and gave great comfort and reassurance to those thinking of travelling this route.
Link to Jacinta Byrne’s presentation – HERE
After a quick break Dara Woods, chairperson of HHT Ireland, gave a presentation – “Call for Volunteers” Dara reminded everyone that Volunteers were always so very welcome. There is so much our Patient Organisation want to do going forward, but it requires many ‘hands on deck’!
Link to Dara’s presentation – HERE
We were lucky to have Fiona Toohey & Paul Corcoran, Corcoran Financial Services to come and present on the difficulties of securing mortgage protection while having a rare disease. The ‘take-home’ thought of the day was to always declare the whole truth and come with all the relevant paperwork showing how you manage your HHT condition and attend all followup checkup appointments as required. Always have your GP witness your application as it will be his statement that will affect the final decision by financial institution.
Link to Petronella & Corcoran FS presentation – HERE
Following on from this topic, Dara Woods presented on HHT & The Liver. Dara shared a recent campaign by all members of HHT Europe for World Liver Day on April 19th. Patients were reminded to be aware of how HHT on the liver could affect the heart and any patients with heart issues should always have their Cardiologist investigate the liver for any AVMs.
Link to Dara’s presentation – HERE
A light lunch was then served where guests had the opportunity to mingle. Many people were meeting for the first time and everyone had the chance to compare their own HHT journey with others.
After lunch, Petronella McLoughlin & Marie Ralphs – the 2 Scientific Reps for HHT Ireland – presented on the “International Scientific Conference, Portugal 2022”. Petronella shared a glossary with us – in advance of Marie’s presentation – to help us understand the terminology! Marie then spoke of the many studies and researches that have been completed on HHT. It was so reassuring to know these investigations are still continuing. We heard of the Knockout Mouse – a laboratory mouse in which researchers have “knocked out” an existing gene by replacing it with an artificial piece of DNA. It is a model for human genetic disease and provides valuable clues about what that gene normally does. Observing the characteristics of knockout mice gives researchers information to better understand how a gene or a similar gene may cause or contribute to disease in humans.We were all left gobsmacked!! But definitely excited for the future!
Link to Marie & Pet’s presentation – HERE
Finally our “Open Floor” segment gave everyone the opportunity to ask any questions they had come with today. So we all went home more informed and confident that we have the information to manage our disease – HHT. Knowing where to look for help or advice gives the reassurance that we are not alone.
Remember to check out our Q&A page for any of your questions.
This was the aim of the Patient Forum – to reassure patients that we all belong to a wonderful #HHTFamily.
We hope you enjoyed the Presentations above and wish to apologise for any difficulty you may have had with the sound
Enjoy the images below.
