Happy World Haemophilia Day 2020 

Irish Haemophilia Society eZine: April 17, 2020
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Covid-19 Update from I.H.S. CEO
World Haemophilia Day - April 17, 2020

Today, April 17th is World Haemophilia Day (WHD). In 2018 and 2019 on this date, the Society celebrated by organising events, art installations and by arranging for many of Dublin’s iconic buildings to be lit up in red.

This year, sadly we cannot do that. It is a surreal WHD for all of us as we cope with an unprecedented pandemic in our time. However, let us not be too downcast. We will persevere and we will emerge from this crisis together. We are marking the day with a Zoom meeting this afternoon on Covid-19 and the implications for Haemophilia. Perhaps not the most uplifting of topics but information is vital at this time and we want to ensure that members are up to date on the implications of the current pandemic for the organisation of haemophilia services. This is the second in a series of Zoom meetings which we are organising for members. Further meetings have been organised for;
* Wednesday, April 22nd @ 11am. Haemophilia Care in Europe (Brian O'Mahony, I.H.S. CEO)
* Wednesday, April 29th @ 11am: Hemlibra Information for Parents (Dr. Beatrice Nolan, Paediatric Consultant Haematologist, CHI at Crumlin)
* Wednesday, May 6th @ 11am: Topic TBC. (Dr. Niamh O’Connell, National Director & Consultant Haematologist, NCC)

Covid-19 Update:

People with haemophilia have no greater susceptibility to Covid-19 infection than the general population. If a person with haemophilia is infected with Covid-19, there may be aspects of the treatment for, and symptoms of, Covid-19 that will have an influence on or be influenced by your haemophilia. Some laboratory assays will be affected, especially if the person is being treated with Hemlibra. This is not new knowledge. The teams at the haemophilia comprehensive care centres and at Galway University hospital will be aware of this but other hospitals or doctors may not.

If a person with haemophilia is infected with Covid-19 or tested for Covid-19, please inform your haemophilia treatment centre. This is very important especially if you are admitted to a hospital which is not a haemophilia treatment centre.

As Ireland copes with the pandemic, we are all starting to realise that a return to what we previously knew as normality may be delayed until such time as there is a vaccine or effective anti-viral treatments for Covid-19 or both. Work is progressing on a vaccine and most commentators expect this to take another 12 to 18 months. There has been an explosion in Covid-19 research focusing on many different classes of potential drugs and also convalescent plasma which could be used to confer passive immunity. The graphic below outlines some 620 clinical trials which are ongoing in more than 50 countries using more than 90 drug classes.

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Ireland is not on the list, but I am aware that research is also being undertaken at the clinical trial facility in St. James hospital.

Dental Emergencies

Dental procedures produce a lot of aerosols which can spread the Covid-19 virus readily in a room. For this reason, dental procedures which can safely be carried out at this time are very limited and include some root canal work to stop pain, drainage of an abcess, dental extraction or dealing with trauma.

The Haemophilia dental teams are providing telephone advice via telephone and video in the first instance and can coordinate your care locally to limit your need to travel.

Prior to any dental procedures in a person with severe haemophilia, you should ensure that you have contacted your haemophilia care team. You should NEVER go ahead for dental extraction or other invasive procedures without contacting the team even if you have a mild bleeding disorder it needs to be planned.

Dr Alison Dougall and Dr. Kirsten Fitzgerald have produced a specific infographic outlining the limited procedures which can be undertaken and the relevant pathways. This is designed to be used by you and shared with your dentist.

Sample Letter & Infographics:

Here is a set of two resources to aid the self management of a dental appointment during COVID-19 Pandemic

We recognise that most dental care is limited to emergency procedures only at this time to address tooth ache or trauma.

We understand that you may be seeing a dentist who you don’t know well.

It is important that you inform the dentist that you have a bleeding disorder and so the resources have been designed to facilitate this process.

This pack includes a general letter that you can email the dentist so that they know that you have a bleeding disorder and gives them some outline information including the contact details of your team. It also includes a algorithm that they can use to ensure that they provide safe care in partnership with you and your coagulation team.

Both can be emailed to your dentist when you initially make contact with them via your telephone or video consultation.

Sample Letter (you can download the PDFhere ([link removed]) )

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Infographics - (downloadhere ([link removed]) )

Brian O’Mahony
Chief Executive
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Webinar and Q&A Sessions

Following the success of our two Webinars and Q&A Sessions this week, we have decided to continue with the series.

Further meetings have been organised for;
* Wednesday, April 22nd @ 11am. Haemophilia Care in Europe (Brian O'Mahony, I.H.S. CEO)
* Wednesday, April 29th @ 11am: Hemlibra Information for Parents (Dr. Beatrice Nolan, Paediatric Consultant Haematologist, CHI at Crumlin)
* Wednesday, May 6th @ 11am: Topic TBC. (Dr. Niamh O’Connell, National Director & Consultant Haematologist, NCC)

To join us via Zoom, please email [email protected] (mailto:[email protected]) with your preferred date (or dates, you can join both if you like) and we will provide you with further details.

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Dental Health for Children

While we are all doing our bit to fight the spread of Covid-19 by staying home and social distancing we must not forget to stay healthy, especially our oral health.

These colourful and informative infographics from the International Association of Paediatric Dentistry ([link removed]) are a nice reminder for children on the importance of oral health.

You can download a higher resolution version 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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Update on Video Consultation from the NCC

While regular clinics and non-urgent day patient treatments are suspended at the moment during this COVID-19 emergency, people with bleeding disorders who have active medical issues are being reviewed by telephone at present, to reduce the need to attend the NCC in person.

With the support of St James’s Hospital and the HSE, the NCC team is now also able to offer video consultation to those people who wish to avail of this, and who have internet access via a smartphone.

From this week, if you are contacted by the Administration team at the NCC to arrange a consultation, you will be offered your choice of telephone clinic or video consultation and you can choose which suits your needs best. If you are interested in video consultation, please have a look at our patient information leaflet (below).

In some cases, it is still necessary to arrange a review in person at the NCC and if so, we will schedule a time for you to attend. It is important to know that we are here and ready to assess and give treatments in person if this is needed.

Read the Patient Information Leaflet here ([link removed]) .

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Comprehensive Care Services & Prescribed HIV Medicines

A couple of quick updates for member’s on Comprehensive Care Services & prescribed HIV medicines.

Comprehensive Care services for haemophilia and inherited bleeding disorders

It is worth repeating that despite the current Covid-19 pandemic, the comprehensive care centres continue to function. If you need to attend with a serious bleeding episode or in an emergency, please do so but do contact the centre by phone before travelling there so that they can give you updated advice on procedures.

Prescribed medicines for those on treatment for HIV

Specialised medicines for those with HIV are normally collected from the special unit in St. James’s Hospital. Arrangements are being made for home delivery of these prescribed medications by TCP for those who are currently on home treatment and home delivery for factor concentrates or Hemlibra.

For those with HIV and haemophilia who are not currently in receipt of home delivery, individual arrangements will be made for each person.
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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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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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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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