HORIZONS August 2012

Volume 10, Issue 2

CHS-MC Golf Tournament – September 11, 2012

The Canadian Hemophilia Society, Manitoba Chapter will be hosting a Golf Tournament to be held at Bridges Golf Course on Tuesday, September 11, 2012.

Golf Committee Chairperson, Ingrid Olson, and a great group of volunteers have been busy over the past few months getting ready for the event. Thank you to Ingrid, Bill Featherstone, Tony Tavares and Steve Blamey for all your hard work. Chapter member, Silvana Moran, designed the logo for the tournament.

$150 Registration Includes: 18 Holes of golf, Cart, Lunch and Banquet Dinner 10:30 a.m. Registration – 12 p.m. Scramble Start

Registration Deadline: Friday, August 24th In addition to the golf and prizes, there will be contests, draws and a silent auction. Those unable to play golf may join us for the banquet dinner for $50. This is a great way for non-golfers to participate! Golfer and sponsor information and registration forms are available from the Chapter office. They are also posted on the Chapter web site in the “Events” section: http://www.hemophiliamb.ca/events-2/golf-tournament-september-11-2012/

Please watch the Chapter website, Twitter and Facebook pages for a call for volunteers to help the day of the event. If you would be interested, please contact the office at 204.775.8625.

We hope that you will consider participating in this very significant fund raiser as a golfer or a sponsor, in support of CHS-MC’s direct services, education programs and support for over 200 Manitoban families managing inherited bleeding disorders as well as blood safety advocacy for all Manitobans.

Inside Articles

Golf Tournament 1

Parents Empowering

Parents 2

Getting Ready for

School 2

Family Camp 2012 3

Women’s Health Clinic 4

Hemophilia Mother 5

John Plater Passes 6

Sexual Health in

Hemophilia 6

Grey Cup Pool 7

Employee Directed Giving

Campaigns 7

Just the Guys Getaway 7

Chapter & Social Media 8

News Bytes 8

Mission Statement

“..to improve the quality

of life for those affected

by hemophilia and other

inherited bleeding

disorders through

support, service, research,

education and

advocacy..”

http://www.hemophiliamb.ca/events-2/golf-tournament-september-11-2012/

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PARENTS EMPOWERING PARENTS (PEP) The CHS will be organizing a Parents Empowering Parents (PEP) workshop for parents from Saskatchewan and Manitoba to take place October 19-21, 2012 in Saskatoon. The Parents Empowering Parents (PEP) program is a parenting program that is designed to be presented to parents, by trained PEP leaders (parents, social workers and nurses) to affirm positive existing parent/child behaviors while focusing on the unique problems faced by parents who are raising a child with a bleeding disorder. Thanks to an educational grant from Bayer, and support from the Saskatchewan and Manitoba chapters, the CHS will be able to cover travel and accommodation expenses for up to 8 parent couples to attend the workshop (4 from each province).

The PEP workshop is an intensive weekend experience and requires a strong commitment from parents. It is suggested that the nurse coordinator and social worker at each HTC work together to identify potential parents who would benefit from the workshop and be receptive to the program. HTC social workers, in consultation with their chapter presidents and provincial staff, would select the parents from their region and forward the names and email addresses to rleslie@hemophilia.ca at the CHS by September 15 at the latest. If your family is interested in participating in the PEP program, please be sure to discuss it with your HTC nurses. Accepted families will be contacted to confirm their registration and to provide them with further details about the weekend, including travel and hotel arrangements.

Program facilitators for the 2012 Manitoba / Saskatchewan Pep workshop are: Patty Phrakonkham-Ali, Social Worker Manitoba HTC; Sandra Waboose, Parent from Thunder Bay; Christine Keilback, Parent from Winnipeg, Nancy Hodgson, RN Saskatchewan HTC; Michelle Sims, Social Worker Saskatchewan HTC.

GETTING READY FOR SCHOOL By Christine Keilback, Mother of 2 Boys with Hemophilia

Families with children with a bleeding disorder have more to do to get ready for the school year than most families. For many, it means a new teacher to educate about the bleeding disorder and sometimes it may even mean a new school to educate. We don’t want school staff to panic over our children. We do want them to realize the seriousness of the disorder and know what our expectations are, when our child is in their care. I have found that establishing an open and friendly level of communication and education to be the keys to success.

Often the school is apprehensive about the responsibility for caring for a child with a bleeding disorder. It is usually very new to them. There are many things that can be done to help alleviate these fears. The Manitoba Bleeding Disorders Program nurses will go to your school and speak to the staff about your child and their disorder. The Chapter has materials such as the booklets, “Hemophilia; What School Personnel Should Know” and “Von Willebrand Disease; What School Personnel Should Know”. Both these publications describe the disorder, how to recognize bleeds and basic first aid. They also discuss what activities are appropriate for our children and which ones aren’t.

I have found that my children’s teachers worry that our expectation is that our children should never bleed in their care. This is unrealistic. Children fall or get hurt in many imaginative ways. What is important to convey to teachers is the importance of first aid and to report an incident right away. I know that some of the member families put a little notebook in their child’s backpack and if the child had a fall or something that causes the teacher to watch for signs of a bleed, the teacher will note it in the book and then the parents know what happened at school that day.

Sometimes errors are made by school staff. It is emotional for parents and sometimes negative things are said. In that moment, it’s hard to remember to use such times as teaching opportunities. Calmly instructing them how a situation could have been better managed, is better for everyone; especially the child. Maybe talk about it the following day, once everyone has calmed down.

mailto:rleslie@hemophilia.ca

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CHS-MC FAMILY CAMP 2012 Thirty six Chapter members set off for Family Camp at Luther Village, July 15th to the 21st. Campers enjoyed a week of sun and fun while learning more about managing their bleeding disorder. Camp provides the kids with the chance to build a peer group who understand what it is like to have a bleeding disorder. It’s just as valuable for their siblings! The parents have a chance to learn from each other’s experience and support each other through the challenges that the bleeding disorder presents.

Rose Jacobson, nurse clinician with the Manitoba Bleeding Disorders Program, spent the week at Luther Village with Chapter families. Rose reported that lots of treatments were given during the week. She conducted education sessions with the older boys and basic hemophilia education was done with the 3-6 year olds. The self infusion tool, Kid K Kit, was used for one of the sessions done with the older boys and a parent. For the first time, program nurse clinician, Janice Karasevich, was able to come out for one day and assisted with an education session. Janice had the full camp experience as she was able to stay overnight! It is wonderful that the kids have a chance to see nurses outside of the hospital in such a relaxed and fun environment. Every year, Rose takes the kids on a frog hunt! Reports are that many frogs were caught and released. Thank you to Ron Silver for the delicious fish fry!

We asked participating families to comment on their camp experience:

Thank you to Family Camp Sponsors:

“I met people I wouldn’t have otherwise. We swapped war stories and exchanged ideas. I gained an understanding of others situations and an appreciation of how good we have it at times.”

“You learn a lot about Hemophilia that you don’t or wouldn’t know otherwise because of all the different experiences and stories from the people who attend. It gives you an opportunity to talk to people who have a first-hand understanding of what you are experiencing.”

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WOMEN’S HEALTH CLINIC By Milena Pirnat

THANK YOU FROM EVENT ATTENDEE The Chapter received this note from a member who attended the Women and Bleeding Disorders Brunch held on February 19TH, 2012. The program delivered bleeding disorders information to Chapter women and their teenage daughters, who

have Von Willebrand’s disease, a rare bleeding disorder or who are carriers of hemophilia.

To the Brunch Organizers,

I just wanted to thank you on behalf of our family for organizing the CodeRouge event. The many speakers presented so much information for us “newbies”. It was incredibly helpful. Thanks to the knowledge we walked away with, I have visited the Women’s Health Clinic where I was given numerous options as well as sound medical advice. I have contacted Genetics and I knew the right questions to ask. But, the most important part is that my newly diagnosed daughter walked out of the event no longer feeling alone and scared. p.s. The treats were great too. Keep up the excellent work!

Marni

The CHS-MC Education Committee and the CodeRouge program have been promoting awareness of women’s community clinics and their services to the CHS-MC membership and the Manitoba Bleeding Disorders Program (MBDP). Physicians from the Women’s Health Clinic (WHC) were invited to, and did attend, the CodeRouge Brunch and an educator from the WHC made a presentation at the CHS-MC Annual General Meeting.

Some women may not be aware (that) of the Women’s Health Clinic; they are centrally located at 419 Graham Avenue, and they offer a wide variety of services for women. Founded in 1981, the Women's Health Clinic is a feminist, community-based health clinic offering a range of services to women of all ages. They have a holistic approach to health which emphasizes prevention, education and action. They encourage women to learn all they can about what contributes to their health and well-being so they can make informed choices.

The Women’s Health Clinic offers health and wellness services that are client-centered, non-judgmental and fully confidential, as well as health education to community and professional groups, resources and information, and advocacy for women's health issues. They also created the Provincial Eating Disorders Prevention and Recovery Program which offers: eating disorder assessment, treatment groups, nutrition counseling, coaching sessions and workshops for family and friends, consultations to Manitoba service providers, referral information for eating disorder services, wellness workshops about body image, emotional eating, health, self-esteem and other topics.

The Birth Centre offers women and their families a range of primary maternity services. These include: prenatal, pregnancy and postpartum care, counselling services, health education programs on parenting, and newborn care. Through their Health Education and Resource Programs, they offer information and learning opportunities for community groups, schools, service providers and individuals on a wide range of health topics.

The new CHS CodeRouge campaign is working towards better care for women with bleeding disorders. Our goal is to ultimately see a Women’s Bleeding Disorders Clinic as part of the MBDP. The CHS-MC Education Committee will continue to work to build awareness of community based services in the hope that it will provide better access to optimal care to women with bleeding disorders. You can find more information about the Women’s Health Clinic on their website womenshealthclinic.org.

Please, always communicate with the MBDP if you choose to access additional health care services outside the HSC program to help ensure that the care you receive is safe and that your caregivers are aware of safety/treatment requirements for your bleeding disorder, Conversely, please advise caregivers outside the HSC that they must consult the MBDP regarding your required treatment prior to procedures.

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HEMOPHILIA MOTHER By Milena Pirnat

Hemophilia management is complex in many ways and has many demands on both a physical and emotional level for people with the disorder, as well as for the people who love and take care of them. There are many important issues that may be of concern for women with bleeding disorders in our community: many mothers of children with hemophilia, like me, are symptomatic carriers who have irregular periods, or bruise easily. Some are single mothers, and there may be any number of psychosocial issues. Rare bleeding disorders each have their own particular set of concerns and challenges that women have to face.

As a mother of a son with hemophilia and a symptomatic carrier, I personally felt the need to communicate with other women who had similar experiences. I wanted to hear how women like me live and what they think. I was born and raised in Sarajevo, where my husband and I lived and worked. We were both doctors by profession. Our son was born a year before a brutal war knocked at our doors, and in that same year, my mother died. We lived in a city that was under siege for almost 3 years, not knowing that our son had hemophilia. I was a motherless mom, in the midst of war, emigration, and raising my son. I missed her guidance and love but I believe that I implemented what I learned from her in raising my son with love and respect.

I remember how happy I was that we survived the siege of Sarajevo, hopeful that our lives would finally be restored and happy that we were alive and healthy. We had a big suitcase and hope for a new life in a new country. My son was diagnosed with hemophilia when he was 5 years old; he could not stop bleeding after his first tooth extraction. We were then living in a new country. I didn't know that I was a carrier, and I knew of no one in my family that had a bleeding disorder. I didn't know anything about bleeding disorders except theoretically what I learned in medical school.

I often felt isolated raising my son. My father was across the ocean and my best friend lived in the USA. We were refugees for one year living in Croatia while waiting to get immigration papers to be able to come to Canada. Life was very busy, so between managing life and hemophilia there was never enough time. I was busy learning a new language, studying and working.

My son is now in his twenties, but my need to communicate with other mothers continues. Thanks to technology and Facebook I was able to open a Facebook page called Hemophilia Mother in the fall of 2010. My Facebook page is intended to help support all women, mothers, daughters, and carriers of the bleeding disorder community. My intention as a health educator is to provide women with new and accurate information, and support them in the best way that I can. Chat can be helpful at times of frustration and it is only a click away. It is also a good opportunity to chat with others and share stories.

I have been Chair of the Education Committee at CHS – Manitoba Chapter for a few years now and it gives me the opportunity to express my concerns and put in action some of the ideas related to women’s health initiatives. We were proud to organize successful education sessions for women but there is still a lot of work to be done to ensure that women have access to the best care available.

I feel that education, sharing information, and emotional support are all necessary to empower women such as myself, to help prevent us from feeling alone and isolated by the condition. There is that sisterhood and web of connections that is necessary for women to express themselves, to share their struggles and their victories too. I am excited that my Facebook page, Hemophilia Mother: became of interest to our international community of women with bleeding disorders and that women find this kind of support useful in their everyday life and health management. Social media network is a great way for mothers to feel supported within our community and I believe that advocating for comprehensive women’s clinics and better psychosocial services for women are the next steps in improving lives of women with bleeding disorders.

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CHS SADDENED BY THE PASSING OF JOHN PLATER On July 28, 2012, Canada lost a tireless advocate and champion for human rights. We are deeply saddened by the passing of John Plater, a long-time friend and dedicated volunteer of the CHS. John died on Saturday July 28th at the Toronto General Hospital from complications caused by HIV and hepatitis C. He was 45.

Many members of CHS-MC knew John from the CHS Youth Group, the CHS Board and for his leadership in the fight to get compensation for those affected by HIV and HCV though tainted blood.

The CHS wishes to extend its deepest sympathies to his wife, Karen, to his mom and sister, as well as his many other family members and friends. He will be greatly missed.

SEXUAL HEALTH IN HEMOPHILIA; Preventing Joint and Muscle Injuries

Our very own Adult program physiotherapist, Greig Blamey, has written a much needed resource for the hemophilia community. Sexual health is an important component to everyone’s life and bleeding episodes and target joints can create some challenges for people with hemophilia.

Discussing sex and bleeding caused by sexual activity can be a difficult topic to broach with your Hemophilia Care Team. This booklet will make it easier to open a dialogue. The book will also be helpful for partners to make better choices when the person with hemophilia is recovering from a bleeding episode or has a target joint.

The book discusses 11 specific sexual positions and the demands those positions make on joints and muscles; ranging from least at risk to most at risk. The book has very tasteful illustrations to show where these risk areas are and there are descriptions of which muscles and joints are being used. The back of the book has summary charts for both heterosexual and homosexual men.

Safe sexual activity is an important part of a happy, healthy life. The book is designed to help make choices to maintain or improve your sexual health and to help you discuss issues with your partner and your Hemophilia Care Team.

Copies of the book are available at the office. We would be happy to post a copy to you. The Chapter will have copies available at appropriate education events. You can also ask Greig and the rest

of the Hemophilia Care Team for a copy.

Congratulations to Greig for bringing this resource to the hemophilia community. Greig presented the book at the World Congress of Hemophilia in Paris this July. It was very well received and it generated a lot of thoughtful discussion. There were many positive comments from the attendees with hemophilia and the health care professionals present. Many copies of the book were distributed after the presentation. The book has been distributed to Hemophilia Treatment Centers across Canada.

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GREY CUP POOL 2012! Thank you to all the volunteers who sold tickets for the 2011 CHS-MC Grey Cup Pool. We are now looking forward to the 2012 pool! The 2011 fundraiser had 28 members, Care Team members and friends of the Chapter who sold tickets. This year we hope to increase the number of sellers and completely sell out the second pool. We bundle the tickets into sets of 10.

The Chapter has the $5 tickets which have multiple ways to win. There are prizes for score changes, end of quarter correct and reverse scores, end of game correct and reverse score and the 0-0 ticket and 29-29 ticket are automatic winners!

Chapter members report that these are easy to sell. It sure makes watching the game more fun! Please contact the office if you would be willing to sell tickets for the Chapter. Every bit counts!

EMPLOYEE DIRECTED GIVING CAMPAIGNS As Fall approaches, many workplaces will be initiating their Employee Directed Giving Campaigns. These campaigns come in many different formats and have different names. CHS-MC receives valuable donations from our supporters who have specifically designated their donation to CHS-MC through these campaigns. For example, donations come from the Provincial Government employees program called the “All Charities Campaign”. We also receive donations from City of Winnipeg employees through their program.

CHS-MC is not an agency of the United Way. The Chapter does, however, receive donations from supporters who specifically designate their donation to CHS-MC through their United Way campaign at work.

Canadians are increasingly using employee directed giving campaigns as a convenient way to make a significant donation to the charity of their choice, in affordable increments. To contribute to the Chapter in this manner, please look for the area, on your company’s form, that allows you to designate your donation to the specific charity of your choice. You will need the Chapter’s full name, address and charitable registration number. This information is in the contact information in this newsletter and is also located in the “Support Us” section of the Chapter website.

If you do not have an Employee Directed Giving Campaign at your workplace, but would be interested in making monthly donations to the Chapter, that can be done through CanadaHelps www.canadahelps.org. The Chapter is listed by the full name; Canadian Hemophilia Society, Manitoba Chapter.

Thank you to everyone who supports the Chapter through Employee Directed Giving Campaigns.

NOTICE: JUST THE GUYS GETAWAY REGISTRANTS Get ready for an amazing weekend! Rose Jacobson, nurse clinician and Matthew Thiessen, pediatric physiotherapist are working with Chapter staff and volunteers to create a fun and educational weekend for the participants! The guys will be staying in Morden the weekend of September 28th and zip lining in Manitou on the Saturday afternoon. We’ll be keeping the theme for the weekend a secret, but we will continue with group games and competitions like the “Amazing Hemophilia Survivor Race” theme of the 2006 program. Details of the weekend will be going out to the families who have registered. Thank you to the members of the Manitoba Bleeding Disorders Program who have volunteered to help deliver the program for the weekend and to the Chapter members who have volunteered.

http://www.canadahelps.org/

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CANADIAN HEMOPHILIA SOCIETY, MANITOBA CHAPTER 944 PORTAGE AVENUE WINNIPEG, MANITOBA R3G 0R1 CHARITY BN 106846991RR001

CONTACT US:

Phone 204.775.8625

Toll-free 866.775.8625

Fax 204.774.9403

E-mail info@hemophilimb.ca

Web Site: www.hemophiliamb.ca

Office Hours Monday to Friday 9 am to 3 pm

NEW TOLL-FREE NUMBER FOR HEALTH SCIENCES CENTER

HSC is pleased to announce a new toll-free number for our out-of-town and out-of-province patients, families and visitors to use.

The number is 1.877.499.8774 and connects to HSC’s Main Entry operators.

Why Follow the Chapter with Social Media Tools? The Chapter uses a number of electronic methods to provide up-to-date information. We have a website: www.hemophiliamb.ca Twitter: HemophiliaMB and Facebook: Canadian Hemophilia Society, Manitoba Chapter. News about Chapter events and bleeding disorders news can be accessed through all three of these electronic formats. These are effective and inexpensive ways for the Chapter to communicate with the membership and the public.

The website provides members with information that they can access at any time. Information that is useful to your daily life is on the site such as the Care Team Contacts. We post past issues of the newsletters and the Client Services Policy. All the forms you may need such as Request for Service forms or the Sports Bursary forms are there as well as news posts on the home page.

Why Twitter? You may think that Twitter is just a tool that people use to follow their favorite Hollywood star. In reality, it is a very efficient way to sort through a large volume of information and quickly access what you are interested in. Bleeding disorders tweets have a short message about a topic and then a link to articles, blogs and websites. It is a vehicle to access bleeding disorder information and experiences from around the world. Blogs in the US have featured articles that the Chapter posted on Twitter and we have received volunteer applications as a result of Twitter. Please follow us!

Why Facebook? The Chapter uses the Facebook page as another vehicle to inform the membership and the public about programs and events that the Chapter is promoting. What is exciting about Facebook is that it offers people an opportunity to comment on the posts. It is also very easy to invite your family and friends to “like” the page and then they will know what is going on in the bleeding disorders community! Please “like” the Chapter’s page!

If there are subjects you would like to see posted in one of our social media tools, or if you have questions about the content, please call Christine at the Chapter office: 204.775.8625 or toll free at 1.866.775.8625. We want to be of service to your family!

Always discuss any bleeding disorders information you get with your Hemophilia Care Team!

News Bytes: Baxter has introduced 2ml diluent volumes for Advate vials of 250 IU

and 500 IU.

The Chapter has copies of “100 Questions and Answers About Von Willebrand Disease”.

Baxter has launched a new website; “Make a Move; How Bleeds Affect your Joints and What You Do About”:www.Baxterjointhealth.com

Thank you to our newsletter sponsor:

mailto:info@hemophilimb.cahttp://www.hemophiliamb.ca/http://www.hemophiliamb.ca/http://www.baxterjointhealth.com/