HHT Ireland patients come together online

We are delighted to tell you that HHT Ireland held our first-ever online Patient Forum on Saturday 24th April, via Zoom. We were thrilled to see 46 people joining us virtually. An amazing result!

It was great to see so many familiar faces as well as many new faces. Our HHT family keeps growing!

We were privileged to be joined by Dr Adrian Brady, Dr Stephen Power & Margaret Murphy from the HHT Centre in Mercy University Hospital, Cork. We were also delighted to have Claudia Crocione from HHT Europe join us from Italy.

Presentations were given by Dr Adrian Brady, Margaret Murphy & Claudia Crocione. HHT Ireland’s Marie Ralphs also gave a fabulous presentation.

We would like to thank all our guest speakers for their contributions. However most of all, we would like to thank our HHT family who attended and participated. Without you this forum would not happen!

Now it’s time to tell you about the event!

Margaret Murphy Co-ordinator HHT Centre

Margaret Murphy, co-ordinator of national HHT Centre in Mercy University Hospital, Cork spoke to us about the best way to make contact with the Centre in order to make initial appointment for HHT screening. Margaret explained what to expect on arrival for the very first appointment ……..

View Margaret’s video here

Dr Adrian Brady, Director HHT Centre

Dr Adrian Brady, Director of our national HHT Centre in Mercy University Hospital, Cork began his informative presentation by explaining what was involved in the screening process. Once a patient has a positive Echo Bubble test, they will be referred to Radiology Dept for further tests.

A CT scan of chest takes 2-3 mns and checks for any AVMs in the lungs. Signs & symptoms of AVMs were outlined by Dr Adrian. He explained that treatment for any AVM would depend on the size of the feeding artery into the AVM. Dr Adrian advised where Pulmonary AVMs did exist, it was advised to use antibiotics before dental treatment. He also advised against scuba diving!

Dr Adrian also advised that an MRI of the brain would also be carried out to eliminate any AVMs. A referral would be made onto a Neurologist if AVMs were found in the brain.

Dr Adrian also discussed Genetic testing for HHT and the procedure for young children suspected of having HHT.

He covered the area around COVID-19 and the vaccine. He emphasised that no scientific evidence existed to advise against the vaccine. There were many sighs of relief on hearing this!

View Dr Adrian’s video here

Dr Adrian Brady Q&A

There were many questions for Dr Adrian Brady.

Patients typed their questions into the chatbox and Dr Adrian kindly answered as many as time allowed.

Other questions have been sent by email to Dr Adrian and all answers will be added to our FAQ section of website as soon as possible. So remember to check in again soon!

View Dr Adrian’s Q&A video here

Claudia Crocione, HHT Europe

Claudia Crocione, Managing Director of HHT Europe gave insightful presentation on the work & aspirations for HHT Europe – a federation of 12 patient organisations across Europe – one of which is HHT Ireland. Claudia covered the various workgroups within HHT Europe and our motto being FASTER FORWARD TOGETHER.

Claudia spoke of the support within HHT Europe and the benefits of learning & sharing together. Topics from Clinical Trials to COVID-19 have been discussed together and an action plan formed on how to keep our members updated.

Claudia also gave a beautiful presentation on a youth programme for HHT kids. Seeing the support and friendships offered is definitely something that HHT Ireland would like to commence. Many thanks to Claudia for the motivation she gave us!

View Claudia’s video here

Marie Ralphs, HHT Ireland

Marie Ralphs gave a very informative presentation on her visit to Madrid in 2019 as a delegate of HHT Ireland to the annual HHT Europe 2-day conference.

Marie began her visit to Madrid’s Centre for Biological Research and her meeting with Dr Luisa Botella & team. Marie learned of the ongoing work into the research of HHT.

Marie covered the outcomes of the recent Puerto Rico conference hosted by Cure HHT . She also enlightened us on the challenges of getting new drugs from R&D stage to market. She introduced us to Dr Sol Marcos from Madrid who practices the technique of Sclerotherapy for her HHT patients with ENT issues. Marie also spoke about the new International Guidelines and introduced us to VASCERN. She spoke of the HHT CAB, comprised of HHT Europe members and The Patient Journey – experienced by many!

View Marie’s video here

Breakout Rooms

After the various speakers had made their presentations, we were all popped into smaller chat rooms and covered topics from Raising Awareness to HHT Specialists to Financial Impacts of HHT. This gave us the opportunity to share our own experiences on these subjects with others and afterwards there was a recap back out in the open floor.

Open Discussion

After a short 30 mns break for lunch , we all gathered again for an Open Discussion.

Members were free to ask their questions and share any concerns they had. As we are all experts by our own experience we were able to offer our suggestions & tips to each other.

Topics ranged from Migraines, Nosebleed Management, Benefits of the various medications such as Tranexamic Acid and also Nosebleed Triggers. Opinions were offered on whether it is advisable to interfere with small AVMs on brain if they are not causing any issues. Patient spoke of their experiences with various anti-seizure medications. The subject of liver transplant was also raised.

All in all, a wonderful experience! A problem shared is a problem halved, for sure! So much genuine empathy & support for each other. As we said our goodbyes we were all filled with inspiration & motivation for the days ahead.

Definitely a day to remember!