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I.H.S. Newsletter 28th February 2017
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Hot off the Press!

The Irish Haemophilia Society are proud to announce that our new look website will be up and running by 2pm tomorrow, Wednesday the 1st of March, 2017. On our new website, you will be able to find information on haemophilia treatment, I.H.S. events and conferences, view galleries of photos, read articles from members, but most importantly, see what services we can provide for you.

You will be able to access the website by logging on to: www.haemophilia.ie from 2pm tomorrow, Wednesday the 1st of March, 2017.

We would be pleased to receive any feedback or suggestions, particularly as this website was updated for you, our members, friends and family members. 

NOTE: Our current website will temporarily be inaccessible from 4pm today, Tuesday 28th February 2017 for a duration of 24 hours. If you require any assistance or information during this time please call the office on 01 657 9900.  

Dates for your Diary 

We have added more events to our diary for 2017. These include information meetings on new treatment, Barretstown camps and an Open Hepatitis C Conference.

PLEASE NOTE: We would like to remind members that we will not be hosting our annual Parents Conference this year. Due to a significant decrease in numbers in 2016, we will now combine this event with the Members Conference in October. May and June will see the introduction of a Father/Son and Mother/Daughter event also. Please see below for details:


March
Annual General Meeting & Conference
Dates: 3rd – 5th March
Venue: Slieve Russell Hotel, Cavan

April
Member meetings re: Information on EHL FIX treatment and Open Forum with CUH team
Date: 4th April at 6.30pm – Kingsley Hotel, Cork
Date: 5th April at 6.30pm – I.H.S. Offices

May
Father & Son(s) Overnight
Dates: 6th – 7th May
Venue: Lilliput Adventure Centre
A new endeavour for the I.H.S. in 2017. This night away in an adventure centre will be open to fathers and sons from 7 to 17 years of age. More information on this exciting overnight will be available soon.

Open Hepatitis C Conference 
Date: 13th May
Venue: Castleknock Hotel, Dublin

Ageing Conference
Dates:19th – 21st May
Venue: Hotel Kilkenny, Co. Kilkenny.
Our third Ageing Conference will take place in May and will cover areas including orthopaedic surgery, pain management, cardiology and social welfare.

June
Mother & Daughter(s) Overnight
Dates: 24th – 25th June
Venue: Lilliput Adventure Centre 
Another new venture for the I.H.S. in 2017. This night away in will be open to mothers and daughters from 7 to 17 years of age. More information will be available soon

October
Members Conference
Dates: 20th – 22nd October
Venue: Hodson Bay Hotel, Athlone

November
Memorial Service
Date: Sunday 26th November at 1pm
Venue: I.H.S. Office

Haemophilia Camp, Barretstown
Date: 27th – 30th November
Venue: Barretstown

December
EHC Inhibitor Summit
Date: 1st – 3rd December
Venue: Barretstown

Christmas party for kids
Date: 9th December
Venue: Grand Hotel, Malahide, Co. Dublin.


Barretstown Camps

Applications for Barretstown Camps are now open and filling up fast! All of the children and families come to Barretstown free of charge. Everything, including accommodation, food and medical assistance are provided at no cost to the family. 

There are different types of camps that may be suitable to your family.

Family Camp: The entire family participate in this camp. The weekend is designed for the family to have a break from the stresses of everyday life and take some time out together to have fun and relax. These camps take place in Spring, Summer and Autumn.

 

Children with Bleeding Disorders Camp: This camp is specifically designed for children with bleeding disorders and are run throughout the summer and last for 6 days. Your child must be between 7 and 17 years old to participate at these weekends.

 

Sibling Camp: Your child must be the sibling of a child with a bleeding disorder. This Camp is only held once throughout the summer and your child must be aged between 7 and 14 years.

 

Brother & Sisters Camp: This camp is running for a second year and is already gaining popularity! Bringing together children with bleeding disorders and their sibling for a weekend of fun and excitement! This camp takes place in Spring.

 

Click here to view the Barretstown website and see what camp is most suited to your child and family

If you have any queries about the camps or if you think your child / children may be interested in attending this year or you would be interested in attending as a family, please contact Fiona in the office on 01 657 9900 alternatively you can email at fiona@haemophilia.ie .

 


AGM and Conference 2017

This weekend, we will be hosting our AGM and Conference in the Slieve Russell Hotel, Co. Cavan. For those attending, don't forget that the programme has changed this year. We will be starting on Friday evening with registration along with a  session and buffet dinner for all guests. 

See here for the final programme:


Women with Bleeding disorders
 
Bleeding disorders in women are often misdiagnosed or undiagnosed due to lack of awareness. An undiagnosed bleeding disorder can put a woman at risk for unnecessary medical procedures, heavy bleeding after surgery or dental procedures and during menstrual periods, and difficulties during pregnancy and childbirth.
 
Haemophilia: Some women who are carriers of haemophilia A or B can themselves have lower than normal levels of the clotting factor and can in some cases experience many of the symptoms of haemophilia. For this reason, it is very important for known or suspected carriers to know their factor level.

von Willebrand's Disease: However, the most common bleeding disorder in females is von Willebrand's disease (vWD). As vWD can be acquired as well as inherited, it is not always detected in women. If you have symptoms of a bleeding disorder, it’s important to get a proper diagnosis and treatment from a haematologist. Comprehensive Care Centres and Haemophilia Treatment Centres in Ireland provide comprehensive care to patients with haemophilia and other bleeding disorders.

 

Here are some signs that may indicate a bleeding disorder in women


1. Heavy menstrual bleeding, called menorrhagia, which is characterised by:
  • Bleeding for longer than 7 days, from the time it begins until the time it ends
  • Flooding or gushing blood that limits daily activities, such as social activities, school, or exercise
  • Passing blood clots that are bigger than a quarter
  • Changing a tampon and/or pad every 1 hour or less on the heaviest day
 
2. Low levels of iron in the blood; having had or having been treated for anemia
3. A family member has or has had a bleeding disorder, such as von Willebrand's disease (vWD) or haemophilia
4. Heavy bleeding from dental surgery or other surgery, and/or other bleeding symptoms, such as:
  • A nosebleed that occurs for no apparent reason and lasts longer than 10 minutes despite pressure on the nose, or a nosebleed that needs medical attention
  • An episode of bleeding from a small wound that lasts more than 15 minutes
  • Bleeding that starts up again within the first seven days following surgery
  • An episode of bruising with little or no apparent trauma, especially if a lump is under the bruiseAn episode of blood in the stool for no apparent reason
  • A history of muscle or joint bleeding
 
Just in case you missed it!

The movie “Haemophilia Stories”, is a wonderful depiction of haemophilia care in Europe. Click here to view the film.

Goran Kapetanovic, academy award nominated director will be creating another film for the celebration of the 50th Anniversary of the I.H.S.

Filming will take place at this year's AGM. We are looking forward to its production!
 
Membership

We would like to remind members that membership runs from January - December of any given year.

The Irish Haemophilia Society provides education, information, services and support to people with haemophilia and related bleeding disorders and their families.

If you have not renewed membership you can do so by calling the office on
01 657 9900 or 
by filling in this online form.
 
Fundraising

A grand total of €5,461 was raised this year between the VHI Women’s Mini Marathon, Sober September, a table quiz, Movember, Christmas cards sale, bucket collections and a Dart Night.

We would like members to know that their contributions and efforts go a very long way and that we really appreciate the support shown.

If you have any suggestions or would like to take part in a fundraising activity this year, please call Nina in the office on 01 657 9900 or email nina@haemophilia.ie. We would be more than happy to help you along the way!
Connect with Us
LINKS OF INTEREST
Irish Haemophilia Society
World Federation of Hemophilia
European Haemophilia Consortium
Consultative Council on Hepatitis C
National Haemophilia Council
Barretstown Camp
Get Ireland Active
Children in Hospital Ireland
Health Service Executive
Irish Health.com
Citizens Information Bureau 
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. 

Our mailing address is: 
Irish Haemophilia Society
Cathedral Court
New St,
Dublin 8, Dublin
Ireland






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