Your Weekly Digest from the I.H.S. 

Irish Haemophilia Society eZine: May 1, 2020
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Update from I.H.S. CEO
May 1, 2020

The Society have been keeping in touch with many members by phone and also by our frequent Zoom meetings. Earlier this week, we had a well attended Zoom meeting on Hemlibra for parents with Dr. Beatrice Nolan and Bridin Brady from Childrens Health Ireland at Crumlin joined as speakers by 2 parents: Ellie Heffernan and Therese Ryan. Today there was a Zoom quiz for adults. We hope to be in a position to do a weekly quiz for adults, children or families.

Our main Zoom meetings for the next 2 weeks are as follows:
* Wednesday, May 6th: 11am: Physiotherapy session for adults with the Physio team from the NCC

You can join the Zoom meeting via this link: [link removed]
* Wednesday, May 13th: 11am: Resilience and coping with Covid 19 with psychologists from the adult and paediatric centres

You can join the Zoom meeting via this link: [link removed]

Covid-19 Updates:

Covid-19 and Blood Clotting

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An article in the Irish Examiner this week (read it here ([link removed]) ) referred to a study from the Royal College of Surgeons which reported abnormal blood clotting in some Covid-19 patients. The research team was led by Prof. James O Donnell from the NCC. This is not an unexpected finding. Infection with Covid-19 causes inflammation in the lungs and also thrombosis or clotting. Higher levels of some markers of clotting have been frequently seen in the blood of those infected and prophylactic treatment with anti- coagulants is often used.

The FVIII level also increases significantly in those infected with Covid-19 but not if they have Haemophilia A. It is important to state that there is no increased risk of infection with Covid-19 for people with haemophilia or other inherited bleeding disorders above the normal population risk. If a person with haemophilia does become infected, their risk of death is also no greater than the general population. However, this finding again emphasises the importance of informing your haemophilia comprehensive care centre immediately if you have tested positive for Covid-19 or if you are being hospitalised in any other hospital

Covid-19 and Paediatric shock

There have been some reports from Europe of a paediatric shock like syndrome in a small number of children who have developed severe illness following Covid-19 infection. (No cases have been reported in Ireland as far as we are aware.) It appears to be a multi-system inflammatory state which can include gastrointestinal symptoms, abdominal pain and cardiac inflammation. Severe Covid-19 infection appears to be rare in children and this appears to be a rare complication in a small number of children to date

Physiotherapy

The NCC have been innovative in their use of video consultations for people with Haemophilia in recent weeks. This has included video Physiotherapy consultations. The Physiotherapy team from NCC will shortly be sending out a survey to people with severe Haemophilia designed to give them feedback on the current system for physiotherapy assessment. We would ask that each of you who receive this survey by post would fill it out and return it. We will also circulate the survey electronically for return to the NCC. The data collected will be used to improve and optimise the service

Brian O’Mahony
Chief Executive

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Webinar and Q&A Sessions

Continuing with our series of Webinars and Q&A Sessions, up next we have further meetings on;
* Wednesday, May 6th @ 11am: Physiotherapy and Exercise for Adults (Physiotherapy Team NCC)

To join us via Zoom, please use the link & meeting ID below:

Join Zoom Meeting
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Meeting ID: 905 221 0070

If you plan to join, we would appreciate it if you could drop Barry an email at [email protected] (mailto:[email protected]) to give us an idea of numbers.

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Strategic Plan 2020 - 2024

Following much work and consultation, the board and staff of the I.H.S. completed a new Strategic Plan to run from 2020 to 2024.

This new plan will guide our direction and activities for the next number of years as we continue to provide the optimum information, services and support to people living with haemophilia, von Willebrand’s and other inherited bleeding disorders, and their families.

You can read / download the Strategic Plan here ([link removed]) .

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Board Update

We are delighted to welcome two members to the I.H.S. Executive Board; Jay McEvoy and Dan McIntyre and we are all looking forward to working with Jay and Dan over the coming months and years.

As we welcome Jay and Dan to the fold, we also say goodbye to Matthew McCabe from the I.H.S. Executive Board. We would like to thank Matthew for all his work, time and dedication in his time on the board.

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Dental Services Update for CHI at Crumlin

We appreciate that at this time you may be worried about your child’s dental and oral health and how to access dental care should your child experience toothache, dental infection or dental trauma.

The team at Children’s Health Ireland (CHI) wish to reassure you that the dental services across CHI are working to ensure you can access advice and support about mouth care if and when you need it. They are currently exploring how best they can see you in clinic with your children again, but for the moment face-to-face care is very limited.

Click here for advice from the Dental Department for Families ([link removed])

CHI at Crumlin COVID-19 Helpline

If you have a general query related to COVID-19, CHI at Crumlin have set up a helpline Monday – Friday 9am to 5pm on (01) 4096117.
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Plan for Beginning Hemlibra

We had another very successful Webinar yesterday; a very interesting and engaging session on Hemlibra with Dr Beatrice Nolan and CHI Crumlin colleagues.

We should have a transcript of the session soon but as requested yesterday, the team @ CHI Crumlin have provided a plan for beginning treatment with Hemlibra.

If you have any questions or would like to request a Hemlibra education pack, you can contact the team @ CHI Crumlin via [email protected] (mailto:[email protected])

You can download the PDF here ([link removed]) .

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Explaining Coronavirus to Children

It is pretty tough for us all to understand and keep up-to-date with all that's going on with Covid-19 - even tougher still is explaining coronavirus to children.

Thankfully there are some freely available publications to help out, like this one Coronavirus: A Book for Children; a book published by Nosy Crow, a British children’s publisher, with illustrations by Axel Scheffler, the artist who created images for the best-selling children’s book “The Gruffalo".

Download the PDF 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 Our Lady’s Children’s Hospital, 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 Our Lady’s Children’s Hospital, 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 Julia 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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Events Update

Hardly a surprise give the current situation we find ourselves in but so far we've had to postpone the following events:

Von Willebrand’s Information Day

Date: Saturday, April 18th
Venue: Castleknock Hotel, Dublin

FYI: This event has been re-scheduled for August 29th.

Young Adult Conference 2020

Dates: Friday, April 24th to Sunday 26th
Venue: Radisson Blu Hotel, Athlone

FYI: This event has been postponed until further notice and will be re-scheduled for later in the year.

Women & Bleeding Disorders Info Day

Date: Saturday, May 9th
Venue: Hodson Bay Hotel, Athlone, Co. Westmeath

FYI: This event has been postponed and will be held in 2021 instead.

Mother & Daughter(s) Overnight

Date: Saturday June 20th & Sunday, June 21st
Venue: Lilliput Adventure Centre

This event has unfortunately been cancelled.
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Our Spring 2020 Magazine is out now!
The Spring issue of our quarterly newsletter - our first remotely produced & digital only mag - is out now!

The latest issue comes packed with loads of interesting articles from members and staff, news and updates, reports from events and more.

In his CEO Report, Brian provides an update on Covid-19 and Gene Therapy, and reports on our recent AGM. Speaking of the latter, there are loads of photos from the weekend in there too.

There are great articles on the Know Your Flow Campaign ([link removed]) , an iPATH update and personal perspectives on educational grants and volunteering with the I.H.S.

It is our first remotely produced and digital only magazine – given the current situation we all find ourselves in – and we hope you enjoy reading it. You can read it via FlipBook here ([link removed]) or download the PDFhere ([link removed]) .

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

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** Barretstown Camp ([link removed])

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