Irish Haemophilia Society e-Zine: October 8, 2021

Irish Haemophilia Society e-Zine: October 8, 2021
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Update from Chief Executive
New educational App available

The European Haemophilia Consortium have just launched an excellent new app for Apple or Android phones. The app is call EHCucate and can be downloaded free of charge from the iOS App Store and Android Google Play

The app is an educational tool with content designed for people with inherited bleeding disorders and their families. Information will be added and updated regularly. Information will be categorised as Easy (beginner level / introductory), Moderate or Hard so each individual can get the information at the level they require. It is also designed to encourage users to initially go through the basic or easy level, then on to moderate and then to hard as your knowledge and level of comfort with the concepts and jargon increases.

There is limited content on the app at this early stage but content will be added regularly and the content that is currently on the app is very good.

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Currently there are sections on:

* Basic information (Easy level), which explains the role of genes
* Genetic Disorders (Easy level)
* Blood clotting (Easy level)
* Clotting factor deficiencies (Moderate level)
* Clinical studies (Easy level)

Content to be added shortly includes:
* Non-Factor Replacement Therapy (Easy level)
* Non-Factor replacement therapy (Hard level)
* Gene Therapy (Easy level)
* Gene Therapy (Moderate level)

We would strongly encourage all members to download and use this excellent resource.

Technology Grants

During the pandemic, it became apparent to us that some members were not engaging with the Society webinars and digital content due to a lack of familiarity or skill with digital technology. We have now provided Digital tablets with the appropriate apps (such as Zoom) pre- loaded to a small number of members.

In addition, our outreach co-ordinator, Robert Flanagan has been providing advice and support to those members.

If you are a member , or if you know of a member, who does not feel comfortable or confident in using digital technology and you or they do not have access to a device, please contact Robert Flanagan [email protected] (mailto:[email protected]) or 01 6579900.

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Routine follow up in the National Coagulation Centre for people with Mild Bleeding Disorders

People with mild bleeding disorders (including Low Von Willebrand factor, mild factor deficiencies, Bleeding Disorders of Unknown Aetiology and platelet disorders) are registered at the National Coagulation Centre (NCC).

In general, people with these mild bleeding disorders will have regular contact with one of the NCC medical or nursing team every 1-2 years. This may be done by a telehealth consultation.

Routine blood testing is not needed for most people with mild bleeding disorders. Any blood tests which are needed will be ordered by your NCC healthcare professional based on your symptoms or clinical needs.

Urgent medical review in a clinic or the H&H assessment unit is available for people with acute bleeding issues –

Emergency Contact Details

Monday-Friday (0800-1700): Please call 01-4103130 or 01-4103000 and ask for bleep 721.

Out of hours: Please call 01-4103000 and ask for the Haematology Oncology SHO “on call”.

Pain relief prescription management

To ensure patient safety and appropriate prescribing, all patients attending the NCC should provide details of their registered General Practitioner.

Provision of repeat prescriptions for pain relief medications (including paracetamol, paracetamol and codeine combinations, etoricoxib (Arcoxia) and all forms of opiates) should be done by the patient’s registered General Practitioner.

The NCC medical staff and nurse prescribers can provide short-term prescriptions for pain relief medications only for short term/acute episodes as clinically appropriate.

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Fiction Through Image – Art workshops for teenagers

Closing date is today, Friday October 8, 2021

Do you know a teenager living with a long term health condition who would benefit from exploring their creativity, having fun and building friendships in a safe and stimulating environment?

CREATE YOUR OWN STORIES THROUGH IMAGE-MAKING

Join Helium Arts for a remote art-based programme using on and offline activities including:
* Creative group sessions over Zoom (max 1hr)
* Offline independent art making
* Optional online drop-in studio time

Sharing your creativity in a private group online space called Padlet Across the programme, you will explore the theme of ‘Fiction Through Image’ through a range of visual arts processes including; photography, collage, illustration, mapping, color, bricolage, and animation.
* For teens with long-term health conditions, aged 13-17 years
* 6 day programme
* Dates are Sat 23 Oct, Wed 27 Oct, Sat 30 Oct, Sat 6 Nov, Sat 13 Nov and Sat 20 Nov 2021
* Free of charge
* Art materials included via the post Facilitated by a trained and experienced Helium Artist

To Sign Up please contact Helium Arts’ Family Liaison [email protected] (mailto:[email protected]) or 086 838 9240

Closing date for registration is Friday 8th October 2021.

For more details, please see helium.ie ([link removed])

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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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