Hemophilia Saskatchewan February 2013

Transcription

1 Hemophilia Saskatchewan February 2013 Winter Newsletter 2366 Avenue C North, Saskatoon, SK S7L 5X5 Tel: or hemosask@hemophilia.ca Everyone Welcome AGM Linger Longer Day with Lunch and Educational Session 11:00 AM President s Message p. 2 Board of Directors... p. 2 M&D Weekend p. 3 Welcome SBDP manager.. p. 4 Living Well Addition. p. 5 HSK Xmas Party. p. 6 CAHR Conference brief... p. 9 Board positions open p. 9 Medical Insurance.... p. 10 HSK Sports Bursary Deadline.. p. 10 Tax Time... p. 11 Louise Paisley Memorial Bursary.... p. 12 Travis Duncan Foundation.. p. 13 Influenza Vaccine p. 13 Upcoming Events... p. 14 Contribution Deadline Date. p. 14 Membership Form p. 15 Donation Form. P. 16 Saturday, March 9, 2013 Mayfair United Church rd Street West Saskatoon

2 2 President s Message Happy New Year!! The beginning of a new year and much to look forward to with Hemophilia Saskatchewan. I hope you will all be able to attend our AGM Linger Longer Day coming up on March 9th in Saskatoon. I encourage you to come out and learn more about what Hemophilia Saskatchewan has been accomplishing and what is planned for the upcoming year. A lunch will be provided and new educational sessions will be presented. April will be a busy month as April 17th is World Hemophilia Day and we are planning to have booths again at Canadian Blood Services in Regina and Prince Albert, to help raise awareness about inherited bleeding disorders. If anyone is interested in volunteering their time to sit a booth in one of those cities, please contact us and let us know. Then, on April 16-18th we will be hosting our first Mother/Daughter weekend at Cedar Lodge in Blackstrap. This is a great opportunity for mothers, daughters, sisters, and grandmothers to reconnect and learn together. Be sure to fill out the registration form in this newsletter to ensure you don t miss this wonderful weekend! I wish you all health, happiness and prosperity in 2013!! Maia Meier President, Hemophilia Saskatchewan Board of Directors President: Maia Meier Vice President: Wendy Quinn Treasurer: Derek Bissonnette Secretary: vacant Past President: Anne Lukian : Ann Wood Director: Director: Director: Director: Director: Kim Cullen Celena Moody Ann Wood Glenn Wood Sandra Dionne Thanks for the Help! Thanks to Bayer Inc. for the grant supporting this newsletter.

3 3 Hemophilia Saskatchewan s Mother and Daughter Weekend 7:00 pm April 26 to noon April 28, 2013 Cedar Lodge, Blackstrap Weekend of Fun Education Sessions Activities & Craft Sessions for Children Bonding For Moms & Daughters of all ages Registration Fee $50 per Family, $25 per single Rooms and Meals covered by HSK for HSK Members Registration deadline April 1, 2013 Accommodations being held for HSK until April 1, 2013 Once you have registered, you will be contacted about booking your accommodations. For more information call: Celena (306) dcmoody@sasktel.net Elaine (306) dandeme57@yahoo.ca Kim (306) kimmit@hotmail.ca

4 4 In August 2012, I began as Manager of the Saskatchewan Bleeding Disorders Program, Saskatchewan Cystic Fibrosis program, Saskatoon COPD program and Asthma program. I am very excited about this new challenge! I previously worked in the field of Cardiac Rehabilitation and Chronic Disease Management (CDM) for the past 30+ years. I am an Associate Clinical Professor in the College of Kinesiology and lecturer in the College of Medicine and School of Physical Therapy. I feel fortunate over these years to have had the opportunity to wear a number of hats. Working within an acute care teaching hospital such as Royal University Hospital, developing and coordinating a wide variety of community based CDM programs for the health region (Cardiac Rehabilitation, Pulmonary Rehabilitation, Diabetes, Diabetes prevention, Chronic Kidney Disease, Heart Failure clinic, rural programs, home programs), being on National committees, co-authoring a book, having a close association with the university and students, yet still spend time on the front lines with the patients. I am married with a 26 year old son in the electrical trade. My wife, Diane and I have 2 rescue dogs that she spends many hours training and walking. We have a cabin at Big Shell Lake where we love to spend our spare time. My hobby if you will is carpentry. I love the outdoors and in the summer go fishing as an excuse to be out on the lakes. I admire and enjoy a good stand up comic and witty comments. I look forward to working closely with HSK to continue to support and improve care to the Bleeding Disorders community. Please feel free to contact me any time. Rick Stene Manager LiveWell Chronic Disease Management Program Welcome Rick Stene

5 5 New Addition to Living Well I am very happy to have had the opportunity to join the LiveWell Chronic Disease Management Saskatchewan Bleeding Disorders Program (SBDP) in November I came to the Saskatoon Health Region with past office experience at Wascana Institute of Applied Arts & Sciences (which is also where I received my Medical Stenographer certificate), Regina General Hospital, Wascana Rehabilitation Center. I have done some retail work, have elementary school teacher s assistant experience, and have been a past business owner. I have been an employee of the Saskatoon Health Region since My time in the Health Region began as a medical transcriptionist for 8 years, having worked at St. Paul s Hospital and Royal University Hospital. I have also spent some time at City Hospital Eye Center and the Payroll Department. In 2007, I transferred to the Chronic Disease Management Department as a Medical Administrative Assistant in the Cardiac Rehabilitation and Diabetes Education section. And this brings me to my current position as a Medical Office Assistant with SBDP, which I am enjoying very much. I am married with three grown children and three adorable little granddaughters, all sisters under the age of 3, who keep us hopping and very entertained. I am looking forward to learning much more about the Saskatchewan Bleeding Disorders Program and hope to be of help to our team and its clients in any way that I can in the future. Shannon Buckingham

6 6 Hemophilia Saskatchewan held their annual Christmas Party December 8, 2012 The afternoon was filled with laughter, kids mingling and getting to know each other.

7 7 The main event was swimming, and the water slides. When swimming was over, the families gathered in the party room for food, drinks laughter and more friendship activities. The gift exchange was of course the highlight of the afternoon. It was a wonderful way to start the Christmas season and we were so pleased to have all who came. We are looking forward to next year s party

8 8 April 17 is world hemophilia day! What are you doing? DON T FORGET TO REGISTER FOR THE MOTHER & DAUGHTER WEEKEND! The Mother & Daughter Weekend will be held April 26-28, 2013 at Cedar Lodge, Blackstrap, just 40 kilometers south of Saskatoon. There will be an educational session on bleeding disorders in women, Michelle Sims will present on siblings and Ann Wood will present on CODErouge. Youngsters who are too young to sit through the presentations will have sessions with activities they will enjoy. There will be sessions that include all age groups sessions that increase the mother-daughter bond, sessions that encourage physical activity and sessions that are pure fun. This is a weekend meant to give mothers and daughters a time to relax and enjoy each other s company while learning and having fun. Be sure to send in your registration by April 1 st and mark the date on your calendar.

9 9 Exerpts from CAHR Conference Report by Faye Katzman The 21 st Annual Conference of the Canadian Association for HIV Research was held in Montreal, Quebec, April Approximately 800 delegates from coast to coast to coast attended the conference which was organized along four tracks: basic sciences, clinical sciences, social sciences and epidemiology. Special sessions, roundtable discussions and ancillary events complemented the comprehensive conference program. My personal interests communication styles, living well with chronic conditions, HIV/HCV co-infections, cognitive impairment, access to care, and criminalization of HIV non-disclosure dictated which sessions I attended. When not working as 'on-site volunteer', I attended sessions on co-infection, adherence issues, premature aging, long-term drug toxicity, quality-of-life issues, drug-drug interactions, and an adjunct session called The Buzz which identified effective communication styles between health care providers and patients. It is at conferences and workshops that I continue to learn how much more there is to learn! I am sincerely grateful for a $500 HSK subsidy which defrayed the cost of attending CAHR 2012 ( Interested in volunteering for Hemophilia Saskatchewan? The following positions are open on the HSK Board : President, Vice President, Secretary, 2 Director positions. Please send nominations to Kim Cullen ( ).

10 10 Insurance and Medical Conditions Hi everyone- I just want to draw your attention to the useful new link on the Canadian Hemophilia Society website- under Support and Education, the last item in the dropdown menu is INSURANCE. There are guides to Individual Insurance, Travel Insurance and Provincial Health Plans. The Individual Insurance section has some excellent advice for considering a policy and some useful links to the OmbudServices for Life and Health Insurance ( There is also information about the Medical Insurance Bureau, a non profit data sharing service where, if you have applied for insurance in the past 7 years, your data may be stored there and shared. You can request to check your information for accuracy. Do so by visiting and completing the request for information or contact the MIB at The Travel Insurance section reviews insurance by province and by the two most common travel insurance policies- Blue Cross and RBC Travel Insurance. There is a link to a helpful Guide to Travel Insurance, which lists questions that you should ask. Please note that information on travel health insurance can be obtained on the Web site of the OmbudService for Life & Health Insurance: The Provincial Health Plan shows a comparison across Canada of provincial coverage for prescription medications. There are also comparisons for coverage for medications for Bleeding disorders ( DDAVP for example), Antiretroviral Therapies, and Hepatitis C therapies. The web addresses are hyperlinked on the CHS website. It s a great resource! Check it out! Submitted by Michelle Sims Social Worker, SBDP Hemophilia Saskatchewan Sports Bursary Program HSK will fund one bursary (maximum of $150) per child, per year, for children and youth, 18 years or younger, with bleeding disorders. Funding may be used for registration fees for an activity which includes instruction from a qualified instructor and/or safety equipment required for the sport. Activities in high risk category are excluded from the bursary program. All activities require consultation and co-signature from clinic physiotherapist prior to commencing program. Please talk to JoAnn, , for further information about the HSK Sports Bursary Program.

11 11 Well, that time of the year is coming- - Tax Time! Did you hear about the cannibal Tax accountant? She charges an arm and a leg! What do Cannibal tax advisors do after their office Christmas dinner? Toast their clients! Bad jokes aside, just a reminder about income tax information related to health. If you, or your child has severe hemophilia and is on regular home infusion, you may be eligible for the Disability Tax Credit. Disability Tax Credit: These are the suggested links from the Canada Revenue Agency website: Line Disability amount (disability tax credit) Line Disability amount (disability tax credit) transferred from a dependant Persons with disabilities T2201, Disability Tax Credit Certificate Line Amounts transferred from your spouse or common-law partner You need to complete form T2201, which can be downloaded from the CRA website. There is a filer s portion and a physician s portion. Your Family Doctor or Hematologist would be sure to appreciate lots of notice if you plan to make this application. The application is under the portion related to a life-threatening illness. Medical Travel Expenses: And, if you travel for medical care, there are also deductions to consider: Round trips of over 40k (most direct route) can be claimed. Mileage and parking, fares, cab, gas costs etc are included For trips of over 80k, you can also claim meals and accommodation. The claim must be reasonable and documented (SBDP post clinic letters would meet this requirement.) You can claim over 12 months, not by tax year- this can be important in maximizing the claim because it is based on a percentage of a larger number. The claim can be maximized by using one claimant, or it can be shared. Submitted by Michelle Sims, Social Worker for the SBDP

12 12 This is Grandma's gift. Louise Paisley Memorial Bursary Louise Paisley was a loving and encouraging Mother and Grandmother. She was raised in an era when the highest education most people ever achieved was grade school. Because of this, she always did everything to encourage her children and grandchildren to pursue a higher education. As a mother, raising a family with bleeding disorders, she recognized the struggles and challenges they often faced in life. Injuries, illness and travel for treatments and appointments required extra time and finances! Yet she assisted us all with a heart of love and support-emotionally and financially. She would be honoured to provide another young person with extra funds to obtain any further education - a goal she admired! Her gift - Face Life's challenges, Stand strong, Never stop learning! Go, Live, Learn! Louise Paisley Memorial Bursary Recipient My name is Wendy Quinn. I am nurse practitioner in Prince Albert SK. and I currently work full time in a long term care facility and was first to work in this capacity in long term care for the province. It is because of this I sought further education to enhance my knowledge in this field to be an advocate for the aging population and a resource in geriatrics for the province. I am enrolled in the Master's of Science - Gerontology NP program at the University of North Dakota by distance and will complete this degree in I am honoured to be awarded the Louise Paisley Memorial Bursary, and of course incredibly

13 13 Tavis Duncan Foundation Through the Tavis Duncan Foundation, Hemophilia Saskatchewan is able to offer help for parents seeking to defray a percentage of the costs associated with the maintenance and treatment of children with hemophilia. Application for coverage is to be made in advance, if possible. Applicants must be registered members of Hemophilia Saskatchewan. The Foundation will reimburse for items and/or expenses such as: the purchase of safety apparel ( ie. head gear, elbow pads) $50.00 per year per affected child, under the age of 18 years, towards the purchase of adequate footwear assistance with in-hospital costs during an extended visit assistance with out of province medical costs summer camps an educational opportunity for a family member to increase their knowledge of hemophilia For application forms, please contact the Hemophilia Saskatchewan office by mail, phone or . Hemophilia Saskatchewan 2366 Avenue C North, Seasonal Influenza Vaccine A few reminders for those Persons with Bleeding Disorders It s that time of year again to decide if the Seasonal Influenza Vaccine is for you. The following is for your consideration in regards to the Seasonal Influenza Vaccine. Influenza is a contagious viral disease of the respiratory system. It is spread by coughing, sneezing, or direct contact. Generally influenza may result in you being at home sick for a few days. However it can also result in hospitalization and even death especially in very young children, the elderly, and those with serious underlying health conditions. For the season the Saskatchewan Ministry of Health has made it possible that every Saskatchewan resident is eligible to receive the Seasonal Influenza vaccine free of charge. There are special precautions to be aware of for those with bleeding disorders. Individuals with a bleeding disorder are at risk for developing a hematoma with the intramuscularly injection of the Seasonal Influenza Vaccine. To lessen the risk of developing a hematoma it is recommended that. For those who are receiving regular prophylactic doses of factor concentrates, it is suggested that the vaccination should be scheduled shortly after a factor treatment when ever possible. For all individuals with a bleeding disorder a 23-gauge or finer needle should be used for the vaccination. Following the injection, firm pressure should be applied to the site for at least 5 minutes. The site should not be rubbed or massaged. If these instructions are followed, a muscle bleed at the site of injection is very uncommon. However, if you notice swelling at the injection site, you should have it checked by the Hematologist or Nurse Coordinator from your Saskatchewan Bleeding Disorders Team. Antibody protection usually begins within 2 weeks after the immunization in the majority of healthy individuals and can prevent illness in about 70% of these healthy people. (Information obtained from the Saskatchewan Ministry of Health Seasonal Influenza Vaccine Fact Sheet and All about Hemophilia: A Guide for Families) Submitted by Nancy Hodgson RN BSN, nurse Coordinator with the Saskatchewan Bleeding Disorders Program (SBDP)

14 14 The next newsletter deadline is April 20, Your contributions are always welcome. You may Or send them to the office, 2366 Avenue C North, Saskatoon, SK S7L 5X5. Hemophilia Saskatchewan acknowledges Baxter, Bayer, Nova Nordisk, CSL Behring, Sasktel Telcare and Sasktel for the support given to our programs. This newsletter has been generously sponsored by a grant from Bayer Pharmaceuticals. Please Note: Opinions expressed herein are those of the authors, and do not necessarily represent the views of Hemophilia Saskatchewan. We do not guarantee the accuracy of information contained herein, and accept no legal responsibility for information quoted from other sources. Upcoming Events for 2013 Hemophilia Saskatchewan Annual General Meeting Mar-09 World Hemophilia Day Apr-17 Deadline for next HSK Newsletter Apr-20 Mother Daughter Weekend Apr Deadline for CHS Scholarship/Bursary HSK Annual Family Picnic Apr-30 Spring TBA Just a friendly reminder! Just a friendly reminder to contact the Saskatchewan Bleeding Disorders Program (SBDP) at least 2-4 weeks PRIOR to any scheduled surgeries, medical or dental procedures that may cause bleeding. This would ensure we had adequate time to make the required arrangements to control possible bleeding that may occur, as well as to educate the health care personnel that may be involved with your care/treatment. If enough notice isn t received your scheduled surgery, medical or dental procedure could be postponed or even canceled. The Nurse Coordinators with the Saskatchewan Bleeding Disorders Program (SBDP). Saskatchewan s Help Lines For bleeding problems we all know we can contact the Saskatchewan Bleeding Disorders Program by phoning our nurses, Colleen and Nancy at The Saskatchewan Health Line, , gives you access to a nurse to help you decide, based on your symptoms, if there is a need to see your doctor or a if a visit to the Emergency Room is warranted. Saskatchewan Consumer Drug Information Service can give you advice on over the counter and prescription drugs as well as herbal remedies. Phone , or in Saskatoon What s new? If you would like to receive an electronic copy of our newsletter instead of a print copy please hemosask@hemophilia.ca with your name and information.

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17 17 Hemophilia Saskatchewan s Mother & Daughter Weekend April 26 28, 2013 Cedar Lodge, Blackstrap Name Adult Child Child/Youth Date of Birth Child/Youth Date of Birth Child/Youth Date of Birth Mailing Address City Province Postal Code Telephone ( )- Weekend Fees: Family (Mother, Daughter & Granddaughter) $50 Single $25 Total Payment Included $ Cancellation/Changes and Refunds: Fees will be refunded, less a $10.00 processing fee, if cancellation or change resulting in a refund is received in writing no later than April 15, After that date, fees are nonrefundable. All refunds will be processed after the conference. PAYMENT METHOD Cheque or Money Order must be payable to Hemophilia Saskatchewan. Registration confirmation/receipt and further information will be mailed. Please check : Cheque Money Order Visa MasterCard Name on Card (Please mail, fax or phone credit card information) Mail Registration to HSK c/o Ann Wood, 2237 Montague St., Regina, SK, S4T 3K4 registration to hemosask@hemophilia.ca REGISTRATION DEADLINE is Monday, April 1, 2013 Accommodations are guaranteed if registrations are received by April 1, Rooms and meals covered by HSK for HSK members, if not a member, send membership with registration. Once you have registered, you will be contacted about booking your accommodations. For information contact: Celena (306) dcmoody@sasktel.net Elaine (306) dandeme57@yahoo.ca Kim (306) kimmit@hotmail.ca