Irish Haemophilia Society E-zine: May 7, 2021

Irish Haemophilia Society eZine: May 7, 2021
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An Update From I.H.S. CEO

Covid-19 Vaccination

The vaccine rollout continues to gather pace and, as indicated on the bulleting from the NCC at St. James which was posted on our website on April 27th, St. James's have now compiled a list of people with haemophilia in Groups 5 and 7. This would include any person with haemophilia or inherited bleeding disorder who was infected with HIV and/or Hepatitis C in the past. People with haemophilia in these groups are now being called for vaccination to Richmond Barracks in Dublin or at St. James's Hospital itself.

For those who would normally attend the Centres at Cork or Galway, St. James's are liaising with them to ensure insofar as possible to have those vaccinations delivered in Cork or Galway. We have been encouraged to hear from a number of people with haemophilia in the last week that they have been vaccinated via the St. James's list. We are also aware that a number of members have been vaccinated through their GP’s or via the HSE portal.

The advice from the centre remains the same: If you are offered a vaccine via the HSE portal or via your GP or contacted via St. James or one of the other treatment centres - it is advisable to take the first opportunity you are offered to have the vaccine. The precautions you should take prior to receiving the vaccine are on our website here ([link removed]) .

If you would like to understand more about Covid-19 vaccination and side effects, you can watch the webinar on this topic from May 5th , where Prof James O' Donnell discusses these topics - watch it here ([link removed]) .

Hemlibra Booklets

We have now produced information booklets on Hemibra ( Emicizumab) for those with FVIII deficiency. There are separate booklets for those with FVIII inhibitors and those with FVIII deficiency without inhibitors. They are available here ([link removed])

If you would like a hard copy and have not yet received one in the post, contact us at [email protected] (mailto:[email protected])

Brian O’Mahony,
Chief Executive
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Physiotherapy / Exercise Classes

The Society are initiating a new programme of Physiotherapy/Exercise classes for members as part of our new focus on lifestyle and healthy living.

Groups 1 & 2 started this week and we are now actively recruiting participants for groups 3 & 4. Each programme will consist of 6 evening classes each of 1 hour duration. Each group will be run by a haemophilia physiotherapist from St. James's Hospital: Sheila Roche and Mark McGowan. A seventh education evening will be devoted to updates on lifestyle with a dietitian and counsellor or psychologist.

Each group will be for a maximum of 8 people. Recruitment will be on a first come first served basis.

The Groups and relevant dates will be as follows:

Group 3: People with Severe Haemophilia, age >50 years
Schedule: Thursday, June 17 (Education evening)
Tuesday June 22, June 29, July 6, July 13, July 20, July 27
Time: 7-8pm

Group 4: Women with Bleeding Disorders (including carriers) , age 18 years or older
Schedule: Thursday June 17 (Education evening)
Thursday June 24, July 1, July 8, July 15, July 22, July 29
Time: 7-8pm

If you would like to participate, please e-mail [email protected] (mailto:[email protected]) . Specify which group you are eligible for and confirm the address to where we will mail the Theraband.

We will be organising additional groups for other categories and age groups among the membership from September onwards.
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Our Spring Magazine Out Now!

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

We like you are hopeful that as 2021 progresses and vaccines rollout, we will begin to see the end of the pandemic on the horizon. The I.H.S. team is continuing, like many of you, to work remotely but we are very proud of the work we’ve achieved in these trying times and how our community has remained; we are especially pleased with how our Virtual AGM & Conference went.

In this issue Brian shares his thoughts on our Virtual Conference & AGM and outlines the new von Willebrand (VWD) guidelines and looks at World Haemophilia Day 2021, with a weeklong focus on VWD. Elsewhere, Robert gives the lowdown on the new I.H.S. Health & Wellness programme; a members guide to be the best you can be.

There is an update on the iPATH study’s progress into 2021 and some personal perspectives on the I.H.S. grants & how the I.H.S. can help you with your studies. I.H.S. member John O’Mahony reflects on a little adventure and the despair of encountering a total stranger at his bedside not wearing a mask – this is a very funny story!

You can read / download a digital edition here ([link removed]) - we hope you enjoy reading it!

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Upcoming Webinars

Continuing with our series of Webinars, we have further meetings coming up on;

Wednesday, May 12, 2021 @ 6pm:
Clinical Trials: An Update from the NCC
with Dr Niamh O'Connell, NCC St. James's Hospital

Wednesday, May 19, 2021 @ 6pm:
‘Clinical Trials – An update from CHI, Crumlin’
with Aileen Molloy, CHI @ Crumlin

To join us for any of this meeting, please use the link & meeting ID below:

Join Zoom Meeting
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Password: 1968

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

FYI: We shall be recording the audio and slides from selected Webinars to make them available to those that cannot attend. Please be assured that only audio from speaker's presentations and not Q&As will be recorded. Attendees will not be identifiable on the recordings.

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Emicizumab (Hemlibra®) Booklets

The Irish Haemophilia Society is delighted to share two new booklets on Emicizumab (Hemlibra®).

There is one booklet for people with Factor VIII Inhibitors and one for people with Factor VIII deficiency without Inhibitors.

These publications have been produced as an educational tool for members and we hope you find them useful and informative.

The I.H.S. does not engage in medical practice and does not recommend particular treatment for specific individuals. It is strongly recommended that individuals seek the advice of their haemophilia treating clinician and / or consult printed instructions provided by the pharmaceutical company before administering the therapy referred to in this publication. The I.H.S. does not endorse particular treatment products or manufacturers.

You can read / download them here. If you would like a physical copy, please contact us at 01 657 9900 or [email protected] (mailto:[email protected])

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EHC Webinar on Women and Bleeding Disorders
Saturday 29 May 2021, 11.00-13.00 GMT

The EHC Women and Bleeding Disorders Committee is delighted to invite you to its second 2021 webinar on Saturday 29 May 2021, from 10.00 to 12.00 hrs CET. Join us to discuss three key issues in the life of women with bleeding disorders:
* Preparing for menarche,
* Fertility, and
* Ageing.

A panel of medical experts will join our committee members to have informative discussions and take any audience questions. This event will be held in English only and is intended for women with bleeding disorders and their families and healthcare professionals interested in the subject.

Register here. ([link removed])

For more info, please see the EHC website ([link removed]) ,

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World Haemophilia Week 2021
:: Focus on von Willebrands Disorder (VWD) A Recap ::

Von Willebrand Disorder was the focus of World Haemophilia Week this year. We fully appreciate the need for greater education about VWD, greater public awareness and greater emphasis from the Society. To this end, VWD was the focus of our events this year.

We had two webinars; one on ‘VWD Guidelines & Research for Diagnoses & Treatment’ with Dr. Michelle Lavin & Professor James O’Donnell and another on ‘Living with VWD’, a discussion panel with I.H.S. members Breda Quealy, Barry Quealy, Donal McCann & Shannon Carey. Two great and informative webinars that you can watch here ([link removed]) .

We launched our new VWD booklet and animated video on social media that we hope will help raise awareness. We also rolled out a social media campaign with Breda Quealy & her son Barry who both have VWD. In this series of video clips, they give an insight into living with VWD. You can watch the compilation of clips here.

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We also garnered some very good national coverage over the week, the highlight being Shannon Carey and Dr Michelle Lavin’s appearance on Virgin Media’s Ireland AM, on Saturday April 17. If you missed it, you can watch it here ([link removed]) .
Von Willebrand Disorder (VWD) is the most common inherited bleeding disorder and 90% of people with VWD globally remain undiagnosed.

It is a complex condition. We hope our activities over the course of the week helped raise awareness and this was not a one off, we are committed to a much greater focus on raising awareness of VWD and advocating for better treatment of persons with VWD.

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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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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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