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National HHT Centre, Mercy University Hospital (Cork):
If you are suffering unexplained and recurrent nosebleeds, it is recommended you contact our National Centre for HHT in Mercy University Hospital, Cork by emailing margaretmurphyhht@gmail.com
There, a diagnosis for HHT will be evaluated by using the Curacao Criteria –
- Spontaneous & Recurrent nosebleeds
- Multiple redspots (Telangiectases) on fingertips, face, lips, oral cavity.
- AVMs (ArterioVenousMalformations) in other organs
- 1st degree relative with HHT by these criteria
Lung involvement: A chest CT scan should be performed by a qualified radiologist who understands HHT.
Brain involvement: An MRI of the brain should be performed by a qualified neurologist who understands HHT.
Liver involvement: Investigations for liver involvement are not usually required unless severe renal or cardiac issues exist.
If you have any suspicion please refer to your hepatologist who understands HHT.
Need HHT Support and Help
If ever you need to talk about your worries concerning HHT, it’s always good to know that there is help available. Our Patient Organisation HHT Ireland was set up to raise awareness of HHT and offer support to those families affected by HHT.
HHT Ireland consists of HHT patients and friends and offers a helpline at 083/4222302.
It is not a medical authority – but can offer support, empathy and guidance to anyone who calls. Any medical queries will be directed to our National HHT Centre in the Mercy Hospital Cork.
Social media is a very powerful tool for raising awareness and so HHT Ireland can also be found on these platforms. Join us and get support:
Facebook group (closed group)
HHT Ireland holds an Annual Patient Forum each year, creating an opportunity for patients and family members to meet others who share the same concerns about living with HHT.
If you are interested in joining this event you can reach out at info@hhtireland.org
This is a great place to share tips in relation to the management of our disorder but also to share contact details of Healthcare Professionals treating other patients with HHT.
Ireland’s Health Service (HSE)
The Health Service Executive (HSE) is responsible for the provision of health and personal social services for everyone living in Ireland, with public funds.
01 850 24 1850 or 01 240 8787
National Rare Diseases Office
The National Rare Diseases Office provides current and reliable information about genetic and rare diseases to patients, families and health professionals. The office was established in 2015 by the Health Services Executive (HSE) and is staffed by healthcare professionals who have significant experience working with people affected by rare diseases.
RDI – Rare Diseases Ireland
Rare Diseases Ireland (formerly GRDO – the Genetic and Rare Disorders Organisation) is a non-governmental organisation with the mission to act as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare diseases.
HHT Patient Organisations in the World
HHT SWEDEN – https://www.hhtsverige.org/
HHT SOUTH ITALY – ONLUS – www.hhtonlus.org
HHT ITALY- ONILDE CARINI – www.hht.it
HHT FRANCE – AMRO – http://amro-hht-france.org/
HHT SPAIN – http://www.asociacionhht.org/
HHT SWISS – www.hhtswiss.org
HHT NORWAY – www.osler.no
HHT GERMANY – MORBUS OSLER – http://www.morbus-osler.de/
HHT FINLAND – https://hht-osler.fi/
HHT DENMARK – https://hht.dk/
HHT EUROPE – www.hhteurope.org
By working together we can find effective solutions to improve HHT patients in their daily lives.
Your life story is valuable in making a difference, the more we talk about it, the more we can change things.