Irish Haemophilia Society e-Zine: October 22 2021

Irish Haemophilia Society e-Zine: October 22, 2021
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Update from Chief Executive
Covid-19 Booster Vaccinations

The Government this week announced the decision to offer booster vaccine to all those aged 60 or older. For people with inherited bleeding disorders receiving a booster vaccine, the indications are that this will be provided via their GP or via mass vaccination centres. In any case, the same precautions will apply as previously applied when receiving the initial Covid vaccine.

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October Members Conference

The first in-person event organized by the society since the start of the pandemic – the October members conference -took place last weekend in the Mount Wolesley hotel in Carlow. Attendance was limited to adults who were fully vaccinated. A total of 32 members were in attendance together with the Society staff and our guest speakers. The weekend was a great success and it was wonderful to see members engage in conversation, in debate and participate in the meeting sessions.

The programme started with a discussion on lessons learned from the pandemic with Dr Beatrice Nolan, Dr Alison Dougall, Declan Noone and Brian O’Mahony. Among the lessons learned were the benefits of telemedicine and virtual consultations, the ability to deal with some dental emergencies virtually and the success of the Society organized virtual Physiotherapy/Exercise programme. Following on the same theme, we then had a presentation of the patient portal from Fergal McGroarty and Rachel Bird from the NCC at St. James’s. The portal is ready for testing by a small group of people with haemophilia and will shortly be more widely rolled out. Several constructive proposals on future content and use were made by members during the ensuing discussion.

Declan Noone and Brian O’Mahony then facilitated a session where members were brought through all the potential treatment options in the next 5 years and they had to look at which treatment they would choose based on their experience of haemophilia, their current and desired activity levels and their quality of life. This was a very interactive session which those present really enjoyed. It was the start of a process of interactive education we will continue as the treatment landscape for the future is varied and exciting.

Saturday finished with a robust debate between members Jim O’Leary and David Flanagan on which was best; Virtual or in-person clinics. Both speakers made a strong case for their preferred option. The resulting vote was a tie which perhaps demonstrates that a hybrid world of virtual and in-person clinics and consultations will be the future.

Sunday started with an update on the Society communication strategy as it relates to social media from Brian O’Mahony. This was followed by an in- person Physiotherapy/ Exercise class with Haemophilia Physiotherapists Sheila Roche and Mark McGowan from the NCC. This was an in-person version of the virtual classes that Sheila and Mark have been facilitating for members for the past several months. We provided yoga mats and TheraBands for those attending and they went through a 45 minute class. The attendance was excellent and indeed following the class, we had 3 additional men sign up to join our current ongoing men’s class and 7 women who signed up for our proposed new women’s class which will commence in the coming weeks. The delegates then had lunch and returned home after a very enjoyable, informative and collegial weekend. We very much look forward to seeing the entire community back at our AGM and Conference in March 2022.

Physiotherapy/Exercise Class for Women

As indicated above, we will be starting an additional on-line physiotherapy/Exercise class for women with bleeding disorders, carriers or partners of people with bleeding disorders in the coming weeks. The class will be for an hour on a weekday evening and the Society will provide the Therabands required.

Further details will be forthcoming in the next e-Zine but if you are interested, please inform [email protected] (mailto:[email protected])

Places will be limited and as a result of the weekend conference and the excellent physiotherapy class held there, we already have 7 women signed up.

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I.H.S. Autumn Magazine Out Now!

Our Autumn Magazine is out now and comes packed with lots of interesting articles from members and staff, news and updates, reports and more.

We, like you are looking forward to the return of life to some semblance of normality as we head towards the close of 2021.

In this issue, Brian provides an update on the H & H Ward in St. James’s Hospital, an additional Haemophilia Consultant Post for CHI, Crumlin & our October Conference.

Elsewhere, Brian pays tribute to Michael Davenport, former I.H.S. Chair and board member, who passed away in June this year. Michael will be fondly remembered by his family and friends and his many friends in the haemophilia community.

We are eternally grateful to all our volunteers. We could not cater to the needs of our membership without the hard work, generosity, dedication and enthusiasm of our very valuable and vibrant volunteers – and who better to regale tales of volunteering with the I.H.S. than volunteers themselves? Eve and Sam do just that, sharing their volunteering stories.

John Stack provides us with his Chairperson’s update and I.H.S. member Colm Walsh writes about his experience in the 10k Galley Head Swim off Ireland’s South Coast in July.

You can read / download the latest issue here ([link removed]) – we hope you enjoy reading it!
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Educational Grants 2021 Awards

Thanks to everyone who applied for an educational grant from the I.H.S.

This year we received a lot of applications once again, which is brilliant! The I.H.S. educational grants are hugely beneficial and go some way to helping cover the expense of education.

The sub-group of the board met over the past few weeks to discuss and score all the applications so we are delighted to announce the recipients of the main grants are as follows:

Maureen & Jack Downey Educational Grants
Peter Walsh €4,000
Molly O'Mahony €2,000
Eimear Farrelly €1,000

Margaret King Educational Grants
Dara Dowling €2,000
Aaron Flanagan €1,000
Aoife O'Connor €500
Elva O'Neill €500

Father Paddy McGrath Educational Grant
Sean Hanney €1,000

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Dublin Zoo Visit Photos

We were delighted with the uptake of free family passes for Dublin Zoo and we hope all of you who did, have a great time and enjoy your visit.

We would love it if you sent us some photos of your trip so we can include in our e-Zine / magazine, please send them to us at [email protected] (mailto:[email protected])

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Travelling or Studying Abroad? ✈️

What You Need to Know....

If you are relocating or studying abroad there is a lot to consider before you travel.

Each country has their own rules and regulations that you must follow to ensure you receive equivalent healthcare to what you receive here in Ireland.

Most countries cover emergency / urgent healthcare that is required while a person is visiting, in accordance with your health / travel insurance. However, this usually does not extend to regular haemophilia treatment and does not cover prophylaxis nor regular on demand therapy.

To help, our outreach co-ordinator Robert has designed a handy and informative infographic to outline all you need to know. You can check it out on our website ([link removed]) .

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My Buddy Cormac
Education tool for children with haemophilia & their families

A clever education tool for children with haemophilia and their families has been created through an innovative collaboration involving students from the Creative Media Department of the Munster Technological University, Children’s Health Ireland at Crumlin and the Irish Haemophilia Society.

My Buddy Cormac, an informative and positive awareness animation about haemophilia, focuses on the experience and challenges faced by children with the condition when treatment in hospital is required.

The story is told from the perspective of a child and it delivers an enlightening and creative take on events.

The animation and visual guide, which is aimed at children aged between eight and 12.

You can watch the animated video / read the accompanying guide on our website ([link removed])

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Watch I.H.S. Webinars On Demand

We've been uploading recordings from our ongoing series of webinars so you catch up on the ones you've missed at your convenience

A sample of what we have uploaded so far;
* Covid-19: An Update on Vaccines & Side Effects with Prof James O’ Donnell
* Staying Healthy at Home: Physiotherapy and Exercise Groups with Sheila Roche, St. James’s Hospital
* An Update on the National Coagulation Centre with Dr Niamh O’Connell (Oct)
* Dental Care: The New Normal with Alison Dougall and Laura Parkinson
* Heavy Menstrual Bleeding in Adolescent Girls with Dr Geraldine Connolly
* Exercise and Physical Activity for Children with Paula Loughnane, Senior Physiotherapist at CHI Crumlin
* Dental Care and Nose Bleeds in Children with Dr Kirsten Fitzgerald and Dr. John Russell
* Gene Therapy Discussion with I.H.S. CEO Brian O'Mahony & EHC President, Declan Noone
* The Role of the Advanced Nurse Practitioner in Haemophilia with Niamh Larkin, cANP

You can watch them here ([link removed]) .

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Hyde Square Apartments

Just to remind you all, that the Hyde Square apartments will continue to be available for members and bookings will be taken as normal.
* People with haemophilia or related bleeding disorders from outside of Dublin, when attending St. James’s Hospital or Children’s Health Ireland at Crumlin for treatment, for a hospital appointment or for a review clinic.
* An immediate family member, a spouse, a partner and/or child of the person with haemophilia or related bleeding disorder from outside Dublin, when attending St. James’s Hospital or Children’s Health Ireland at Crumlin for treatment, for a hospital appointment or for a review clinic, or while a family member is an in-patient.

To make a booking, please contact us on 01 657 9900*.

For more info, please click here ([link removed]) .

*A nominal fee of €10.00 per booking, per night will be levied to offset the cost of cleaning and routine maintenance.

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LINKS OF INTEREST
** Irish Haemophilia Society ([link removed])

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Irish Haemophilia Society
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