Irish Haemophilia Society eZine: July 30th, 2021
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I.H.S. Family Day out to Dublin Zoo
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Dublin Zoo is celebrating a milestone year as it marks its 190^th anniversary. Dublin Zoo is a cherished Irish institution and a trip to the Zoo is a childhood memory many generations will remember fondly.
The I.H.S. are delighted to announce that we will be offering some free of charge passes to family members of the I.H.S. to visit Dublin Zoo. If you would like to obtain a free pass, all you have to do is complete your details below and we will email you a voucher code to allow you obtain your free pass. Please note that email is the only method of receiving your voucher code.

To Book Your Voucher Click Here ([link removed])

Key Information
* The closing date for requests is Friday 13^th August.
* Once you complete your details you will receive your voucher by Tuesday 17^th August.
* You must then arrange the booking yourself online by going to [link removed].
* Your voucher code will be valid for one year.


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Educational Grants 2021
Applications Now Open

We are delighted to announce that applications are now invited for the 2021 Educational Grants.

The Society offers educational grants each year to people with haemophilia or related bleeding disorders, and/or their immediate family members who go on to do a post second level educational course.

The purpose of the grant is to offer financial support to students to assist them with the extra expenses involved with their studies.

** Please note, even if you are eligible to apply for more than one grant, you can only apply for one of them.

You can apply online or you can download the application forms below, and post the completed forms into the office; there is more info on the various grants is available here ([link removed]) .

Maureen & Jack Downey Educational Grant: Apply Online ([link removed]) / Download Application Form ([link removed])

Margaret King Educational Grant: Apply Online ([link removed]) / Download Application Form ([link removed])

Father Paddy McGrath Educational Grant: Apply Online ([link removed]) / Download Application Form ([link removed])


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Novel Treatments in Haemophilia & other Bleeding Disorders: A Periodic Review
2021 – Issue 1

The therapeutic landscape in haemophilia continues to change rapidly and it can be difficult to keep up to date.

The Society has adapted a publication compiled by the European Haemophilia Consortium to produce a comprehensive update on ‘Novel Treatments in Haemophilia & other Bleeding Disorders: A Periodic Review’.

It is designed to be informative for both people with bleeding disorders and health care workers.

Read / download it here ([link removed])


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Galley Head Swim 2021
Member Colm Walsh swims the 10k Galley Head Swim.


Well I sit here staring to write this I think back to the day I signed up for the Galley head solo 10km swim. It was the 14^th of May 2012 and I was on a waiting list for about an hour when I got the spot. I remember being so excited about getting the spot and knowing that I was in and going to the swim.
I swim around Sandycove Island in Kinsale and I have been going there for about 8-10 years, but it is only in the past 4 years that I have really been doing a lot of swimming there. I got my first 100 lap cap on 8^th of October 2020. I try and swim everyday if I can but I also take a day off here and there just to appreciate it even more when I do swim.

I knew from the 14^th of May for the next 2 months all that would be on my mind would be to get ready for the swim as best I could both physically and mentally. In 2019 when it was in its second year, I wanted to do it, but unfortunately I fell and did more damage to an already damaged knee. It was very serious, and I did not know whether I was going to be able to walk again. I had a full knee replacement on the 1^st of October 2019, and I am still doing physiotherapy today as I write this. I honestly did not know how well I was going to able to get around or even swim after the surgery. My first time back swimming in Sandycove was the June weekend 2020. I remember crying when I came out because I was back in the water and swimming in a place that’s very special to me. Everyone was so kind to me as I was still only learning how to walk and taking things just one step at a time.

On the day I got the spot in the Galley Head swim I was after doing my 50^th lap of the island this year. I knew I had to up my distance and endurance to be able to do the swim. I was swimming with Alex Jeffers and David Conradie and we were doing double laps. It was so nice to have people to swim with. It can get very lonely on your own and having someone with you keeps the motivation going. I also knew I had to swim in all conditions and that was going to take a lot physical and mental strength to overcome the fear of different conditions.

On the 18^th of May I did my first 4 laps of the island which is 6.1km in 1 h 47 mins. Ned Dennison had suggested to go wide outside the marker buoys to build up my distance and I did this every lap up to the swim. The following day I did 3 laps, 4.6km, in 1h 20mins and I felt ok. On May 29^th I did a 7km swim, 4 laps, with David Conradie in 2 hours and I was thrilled, and as I was coming out people on the slipway were congratulating me. I remember Adrian Healy giving me the thumbs up and saying well done. To get that from Adrian, who has done the English Channel, was a huge motivation to keep going. Everyone on the slip that morning was saying well done. I did notice around the 5km mark my left hip was getting sore because of my legs being in the same position most of the time. I had to turn on my back to move my left knee up towards me and free my hip. This caused pain but once I did it, I was ok to carry on.

My goal was to do one big swim of 6-7km a week and then keep doing the double and triple laps. I was always pushing that bit harder every swim and increasing my pace. All the time I was swimming all the swimmers and even paddlers in Sandycove were encouraging me. I found the early mornings a bit of a struggle to get up to be honest, but I knew there would be swimmers there and that helps enormously to keep you going.
The swimmers who swim in the morning are a small group but all have great experience and when I swim with them I am always learning new things.

On the 13^th June a group of us swam from the Dock beach to Sandycove Island and this was my first big swim of the year. The weather that day was lovely. It was good to push myself out of my comfort zone and go into open water.

Killian, Grainne, Dorothy, Denise, Aideen, Ned and myself all did the swim, and I did 5km in 86mins. I was so happy, and I knew I was improving in every way. I was eating well also and getting good amount of sleep. Porridge, chicken, veg, pasta and rice were my basic foods.

Aideen mentioned her husband Eoin was helping a member of Kinsale Tri Club to prepare for the Galley Head swim, and I should contact her as it is always good to have a training buddy. Her name was Sinead Barnett. Eoin and Sinead were going to swim from the Speckled Door to Sandycove and do a lap of the island. I got in touch with Eoin and Sinead to see if it was ok to come along as it would be a good opportunity to do feeds. I needed a kayaker to act as my safety for the swim. Sinead, my partner, helped out greatly by putting a notice up on the Kinsale Notice Board page on Facebook. Very handy to know.

19^th of June was a Saturday and the weather was looking ok at the start but was forecast to change during the swim. The south westerly wind picked up and it became lumpy and the swell began to build. I was being tossed around a bit, but my safety kayak which had my partner Sinead on it as well, was a great comfort to see alongside me. I had a feed but my bottle was too big and it was a mess trying to drink from it in the swell. As I could see the brown house of Sandycove in the distance I said to myself keep going you are getting there. The swell was getting stronger and as I came closer to the island it was a welcome sight. I went around the outside and headed for corner 3 and then the swell died because I was sheltered. I swam to the beach and had a feed as I could stand and said I could not go around and face the swell again. It just was not in me. I saw Eoin and Sinead heading up the pill and I swam with them and get my distance up. Swimming in the pill was lovely and calm and warm
and it was such relief to my now sore body. I did 8km in 2h 25 mins that day and that was a huge learning swim.

On 23^rd June, myself, Grainne, Celine and Ned swam from the Dock beach to Sandycove and back to the Dock beach. I did not do a lap of Sandycove that day as the tide was too low, and I find it very hard to walk with my knee in low water. I also have a fear of hitting it on a rock. Peter, Celine’s husband, provided safety on his kayak. On the way back, coming around Fisherman’s point, I found myself saying why am I doing this, and I struggled heading for the Dock beach. I could see Ned and Catherine on the beach, and I just said one hand at a time. I got there. 6.8km in 1h 58 mins.

I keep doing my doubles and triples around Sandycove but also making sure my body was doing ok. I have two legs that do not kick and just hang there while I swim. It is all upper body I use for swimming. On 27^th June, I did 4 laps, 6.2km, in 1h 53min. I knew I had to do a 10km swim just for my own confidence. On 30^th June I swam 4 laps, 6.3km, in 1h 50 mins. On 1^stJuly I did 6 laps, and 10km in lovely conditions with swimmers going around the island just doing singles and doubles. Denise did 5 laps herself that day. I wanted to reach that 10km mark and I did it in 2h 55mins. My hip became sore twice during that swim but I did my normal stop and just freed it out. I was thrilled and so happy. I had done 10km. I punched the water as I got and said yes I can do this, even with my non kicking legs. That week I did 29.4 km and I was 2 weeks out from the Galley Head swim. The week before I did 26km, and the week before that 23.3km.

As I say, I was swimming in all conditions, and one day when I swam with Ned it was very lumpy on the outside of the island. The skies were grey and there was a mist also. It was horrible to be honest, but I did it because it was important to swim in these conditions too.

All this time the support and guidance I was getting from other swimmers was enormous and it helped me a great deal. Just getting advice about feeds and how best to work them out was a great help. Everyone in Sandycove was wishing me the best for the swim and saying ‘It is in you’ and ‘You have it’ just gave me great confidence in myself.

Alex Jeffers and his daughter Bronwyn were going to be my safety boat and crew for the Galley Head swim. The week of the swim I had to taper down my distance so I wouldn’t be burnt out for the swim. Let me just say this was harder than the swim as I was only doing 1 lap of the island a day. To make it even harder, the conditions were flat calm and it was so tough to come in after 1 lap. Joe, who swam with me, could feel my anxiety but it had to be done.

On the 17^th July, the day of the swim that I had waited 2 years to do and trained hard for 8 weeks, was here. Conditions were ideal. Sunny, blue skies, light easterly breeze. Karen, a swimmer from Sandycove just arrived before the start to wish me good luck. I got ready, kissed Sinead, and waited for my time slot to come. 11:03 was my time. I was 18^th to go in. I watch as everyone before me ran in the water. My time came and I walked with a limp to the water’s edge. I did not care who saw me or what they thought of me. This was my time and my swim. I went in and off I started and headed for the green buoys to meet up with my safety boat. We had pre-arranged my feeds every 45 mins from the time I started. I had 250ml bottles of water with diorolyte mixed in them.

I met Alex and Bronwyn and gave the thumbs up and off we went. I was going to set the pace and Alex was going to guide me. That was the rule and I stuck to it. I breathe only on my right, and I stayed to the front of the boat as we had discussed. I was in a nice groove and all was going ok. All went fine with the first feed and Alex said I was after passing 6 others already. That was fine and I told myself to keep it steady. As we rounded the Lighthouse on Galley Head and I looked up and I could not believe I was swimming around the Galley head. This time 2 years I was at home sitting on a chair with my right leg in a permanently straight position, and I did not know what was going to become of my leg.

It was an emotional moment to see the lighthouse towering above me and the blue sky behind it. I slowed down and took a full breath of air in and said Colm you are doing it.

I got to the third green buoy, about half way, for another feed and I drank 2 bottles. All was going well but the easterly breeze was a bit of a slap on my face saying you are not going to get it that easy. I had to work hard, and the boat never left my side. I could feel my hip coming at me, so I just waited until I knew I had to slow down and do my normal routine. I got to the next buoy where we had to turn to the left, and Alex pointed the direction and off I went. The wind was behind me and it gave me a great push, which felt great. All the time I was aware of my legs just hanging there not doing anything. I could feel the extra bit of weight in my right knee and that is due to swelling and a very difficult surgery. The next feed did not go well, I got one bottle into me but could not get the second one into me.

I could see the 2 green buoys in the distance at the entrance to the finish. I thought OK, just keep going. My arms were feeling ok but I hit that mental wall at around 8.5km. It was a big one but I just kept my head in a good place. I had my safety boat alongside me and they were willing me on. I dug down deep and remember back to the day in the hospital when I first stood up with the walking aid. The next day I took 2 steps. The following day I took 6 steps and made it to the door of my room. I was swimming now and these memories returned and gave me the power to keep going and believe in myself so that I could finish the swim. I was after coming through so much in the past 2 years. Nothing was going to stop me.

Alex signalled I was nearly there. I was nearing the green buoy and my safety crew could not go any further. As I waved to them and gestured Thank you I could not hold back the tears of joy that were running down my eyes. I was there only a small bit to go. They headed away and I got back swimming and I was joined by a young man on a paddle board to guide me in. As I swam the tears stopped and I could see the sand underneath. I was nearly there. Then on my left-hand side I spotted Sinead my partner swimming alongside me and yes I was after making it. I stopped, put my hands on the sand, and felt it go in between my fingers. Brought my legs forward, bent my left knee, put my foot on the sand and brought my right leg underneath me and stood up. I got help from 2 stewards just to help me steady myself. I started walking in towards the finish line and the crowds of people were clapping and cheering for me that I had done the swim. I could not run in but I did not care about that. I was after
swimming 10.45km in 2h 59min 40 seconds.

I HAD DONE IT!!!!.

I got my picture taken and I was the 3^rd man in and I came 5^th overall. That did not matter to me because for me, completing the swim was the reward.
Karen had come to the finish also and gave me a hug and then she had to leave. Sinead and I hugged, and I started crying again but these were tears of joy. Sinead has been through all the heartache since I fell, and she has seen me at my worst and lowest but today they were all in the past. This was today in Warren beach, Rosscarbery, West Cork.

As I sit here now after writing this I hope it inspires someone to go out and set a goal for themselves no matter how small it is. On the 2^nd of October 2019 my goal was to put one foot in front of the other and just take two steps.

On the 14^th May 2021 I set a goal to complete The Galley Head Swim. On The 17^th of July I completed the Galley Head Swim

I have another goal ahead of me to swim 200 laps of Sandycove this year also. As of today, 22^nd of July, I am at 149 laps.

When that is done, I will see what is ahead of me.
I wish to thank all the swimmers in Sandycove who show great friendship and support. If you want to know anything, just ask and anyone of them will be happy to share any information with you. My family who are always there to support me no matter what happens.

Finally, to my partner Sinead who always supports me and gives me those little pushes in the right direction. She has succeeded in getting me to eat broccoli so that is also some achievement.
I just take one day at a time.

BELIEVE IN YOURSELF AND YOU CAN ACHIEVE ANYTHING.

See you in Sandycove.

Colm
I have severe haemophilia B, factor IX deficiency.

Weeks swimming
1^st week 13.8km 5^th week 23.3km 9^th week 5.1km
2^nd week 22.1km 6^th week 26km Galley Head Swim 10km
3^rd week 16.6km 7^th week 29.4km
4^th week 20km 8^th week 19.6km

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Update on services at Children’s Hospital Ireland, Crumlin

Services at CHI ,Crumlin have been severely affected by the cyber attack on the HSE. Clinics have been scaled back and review clinics for children with severe bleeding disorders are now held on a limited basis on Monday’s. Diagnostic clinics have been postponed and new referrals are being triaged. We will update members with any further information received.

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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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2021 VHI VIRTUAL WOMEN'S MINI MARATHON
REGISTRATION IS NOW OPEN

This year's Women's Mini Marathon will be a virtual event and will take place on Sunday 19th September. You can race the real route of the VHI Women's Mini Marathon in Dublin City from your doorstep, anywhere in the WORLD using a brand new event App

Sign up today and run, walk or jog the Virtual Vhi Women's Mini Marathon, and receive an exclusive finishers t-shirt and a 2021 commemorative medal.

We are very grateful to all the ladies who take part in the Mini Marathon for the I.H.S. every year, your support for the work of the Society is really appreciated. An event like this is so important, not only to raise funds but to raise awareness of haemophilia and other bleeding disorders.

So, if you have a bleeding disorder or if you are the mother, sister, daughter, niece, cousin or friend of an adult or child living with a bleeding disorder, now is your chance to show your support by taking part in this year’s VHI Virtual Women’s Mini Marathon to raise funds for the I.H.S.

Visit vhiwomensminimarathon.ie ([link removed]) to register online.

To raise funds in aid of the I.H.S. or if you would like more info about fundraising, please contact Nina on 01 6579900 or email [email protected] (mailto:[email protected]) .

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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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Copyright © 2016 Irish Haemophilia Society, All rights reserved.
As a member of the Irish Haemophilia Society you have agreed to be on a mailing list from which you will receive monthly eZines from the IHS.

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Irish Haemophilia Society
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Dublin 8, Dublin
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