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  • World Federation of Hemophilia Twinning Partnerships a Success | HemAware
    to help improve care for people with hemophilia Patient organizations can also team up with similarly positive results These partnerships emphasize activities that can make a patient organization successful Examples range from helping a newly forming national member organization with fundraising training board members and setting up summer camps to encouraging regular elections within the organization working on its constitution or lobbying government officials For example through the Twinning Program in 2009 the Quebec chapter of the Canadian Hemophilia Society helped the Tunisian Hemophilia Association develop a Web site and newsletter and create groups for mothers and children Why Consider Twinning Many chapters think that twinning entails a lot of time and effort but big differences such as sharing advocacy skills to increase factor availability can easily be done says Antonio Almeida WFH programs director Hemophilia of Georgia has participated in the Twinning Program twice first with Chile then with Honduras It sounded like something that would bring a new dimension to our work says Trish Dominic chapter CEO We would be helping a country whose patients may not be as fortunate as those in the US By the same token we would learn about another culture people and system of healthcare Get Involved To get involved start by talking to your chapter members contacting the WFH and thinking about which region of the world interests you the most It has been wonderful to make friends with the Chileans and Hondurans Dominic says To help them succeed and to celebrate their success with them that is what it s all about Learn More For details on WFH s Twinning Program visit its Web site wfh org or e mail Nicola Hope Watch WFH s twinning videos View the discussion thread Life Stages Infants Children Teens Young Adults Adults Aging Research

    Original URL path: http://www.hemaware.org/story/double-duty (2016-02-18)
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  • Calming Kids’ Anxiety Over Needles and Infusions | HemAware
    well hydrated and if possible have him take a shower Both will make veins easier to find hydrating plumps veins and the warmth of showering or bathing dilates them says Hope Woodcock RN of the UHSH Blood Disorder Center at UHS Wilson Hospital in Johnson City New York Next choose a quiet room with muted lighting Fung says Speak softly and soothingly Encourage your child to look away from the needle during infusions Pain is what you perceive it to be says Huszti So telling a child he isn t feeling pain is not helpful Even using the word pain creates anticipation of it and may increase it she says So choose your words carefully Use discomfort instead of pain instead of burning try calling it warmth You re helping the brain send a different signal that you re OK that this is something you can cope with Huszti says Your mind will recall that you ve done this before and you got through it But don t lie to your child she says If you tell him it won t hurt the pain will be a shock and he will feel betrayed Turn the Tables Sometimes what a child needs more than anything is an example that needle sticks aren t scary Woodcock who volunteers at two summer camps for children with bleeding disorders in upstate New York allows younger campers to watch their older counselors access their own veins Steps for Living All About Camps Try letting your child stick you with a clean needle Ziva remembers her infusion specialist telling her Trade him a stick for a stick It made an enormous difference for Shai she says When your child sees you handle it well he will feel encouraged A few years later when Ziva who has mild hemophilia A fell down a flight of stairs and needed infusions Shai wielded the needle He did them all with a huge grin she recalls He did a really good job Hand over the Reins Sometimes children aren t as afraid of the needle as they are that their bodies aren t under their control Let your child make some choices without allowing him to decide not to infuse at all Fung says The more the child can be in charge the better the whole process is and the faster it goes For instance Shai brings his own tourniquet with him when he needs blood drawn The familiarity calms him Let your child choose where he wants to sit for infusions or what arm or hand to use for the needle Fung suggests Desensitize Kids For some kids going slowly and practicing relaxation techniques when they start to feel afraid is the way to go See sidebar Ease Into Infusion This desensitization works by slowly easing a child s anxiety about each element of the infusion process and encouraging him to relax along the way The child goes from feeling fear of the entire infusion process to being able

    Original URL path: http://www.hemaware.org/story/needle-know-how (2016-02-18)
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  • Playing Sports With Hemophilia | HemAware
    or physical therapist My Game Plan which Herman Hilker helped develop was inspired by an experience at the Hemophilia Foundation of Michigan s Camp Bold Eagle in Holton In 2007 campers played a game of Capture the Flag a Bold Eagle favorite But something alarming happened Nineteen of the nearly 60 campers experienced bleeds or other injuries during the three hour game The camp s head nurse Jim Munn RN MS nurse coordinator at the University of Michigan s Pediatric Hemophilia and Coagulation Disorders Program says the reaction among staff was quite emotional We always expect a few injuries Munn says That s what happens when kids play But 19 We had to ask ourselves Did we do this to the kids What could we have done better Ready Set Go To play Capture the Flag players are split into two teams Each team has a flag usually something colorful and easy to carry The ideal playing field is large at Camp Bold Eagle the game is played over the entire 50 acre site The field is divided into two territories Flags are placed deep inside each team s territory and players have two primary missions to steal the other team s flag and to defend their own Capture the Flag is not a full contact sport but at Bold Eagle it involves a lot of running and dodging over different types of terrain Players can fall or collide with one another Courtesy of University of Michigan Hemophilia and Coagulation Disorders program After seeing one injured camper after another Herman Hilker the camp s physical therapist wanted to ban the game But many counselors had attended the camp as children and treasured their memories of playing Capture the Flag Their passion for keeping the game matched Herman Hilker s own desire to get rid of it Listening to them she says was a game changer The debate shifted from How do we get rid of it to How do we keep it but make it safer That debate led to the workbook which was distributed at Camp Bold Eagle the next summer After completing it each camper met with a health center staffer to decide the best and safest way to play Those for whom running puts them at risk were assigned positions that were more stationary but still integral to the game That year we did not have any injuries says Herman Hilker The workbook can be used to evaluate any physical activity It gets kids to take a serious look at an activity and to critically analyze it says Herman Hilker Then they talk about it with their parents and their healthcare provider Herman Hilker recalls one 8 year old boy who wanted to play football After filling out the workbook he realized it was not the right sport for him He came to that decision on his own she says Munn says the workbook can be used by adults with bleeding disorders as well I d give

    Original URL path: http://www.hemaware.org/story/playing-sports-hemophilia (2016-02-18)
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  • Learning to be brave when it’s time for your factor infusion | HemAware
    go of your seat Then one day you pedaled as hard as you could and whoosh you were riding alone You did it You can feel that same way about needles and infusions A Spoonful of Courage Learning to be brave with infusions takes practice but you can do it It can be hard to tell someone why you re scared You might not be able to put it into words But it s important to tell your parents your hemophilia treatment center HTC nurse or others who care They can help you figure out why you re scared and help you become brave If it s time to infuse and you just can t get yourself to sit still try thinking of your favorite place the beach a family vacation spot or camp You can ask your parents or the HTC nurse to imagine it with you Anything that helps you calm down is good when you know an ouch is coming Try taking deep breaths and counting how many seconds you can breathe in and out slowly Watch a favorite movie when you infuse Ask your mom or dad to read your favorite book or make up a story together If you re scared ask your nurse or your parents to show you ways to tame your ouches Getting an infusion doesn t have to be a pain Overcoming a fear can help you feel braver stronger and proud of yourself too You re doing the right thing by taking your medicine when you should View the discussion thread Life Stages Infants Children Teens Young Adults Adults Aging Research Treatment Hemophilia A B von Willebrand Disease Rare Bleeding Disorders HIV Hepatitis C Surgery Transplants Researcher Profiles Health Wellness Fitness Nutrition Taking Charge Pain Management Parenting Family Parenting Family

    Original URL path: http://www.hemaware.org/story/taming-wild-ouchies (2016-02-18)
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  • College Student Creates Brochure About Women and Bleeding Disorders | HemAware
    similar to those of men such as easy bruising frequent nosebleeds and heavy prolonged bleeding after surgery However women have other bleeding issues in particular heavy menstrual bleeding These symptoms are sometimes ignored by physicians and the women themselves Some women even undergo hysterectomies to control their bleeding unaware that they have a bleeding disorder and that there are other treatment options available How does the task force spread its message We host several programs at different events For example at the NOHF annual meetings in 2008 and 2009 there were informational and discussion sessions about issues concerning women and bleeding disorders We also produce publications As part of my senior project at Hiram College in Ohio I worked with the Women s Task Force and NOHF to create a brochure about women and bleeding disorders The intent was to provide concise educational information to individuals in the medical community as well as those affected by bleeding disorders The brochure provides not only symptoms and personal stories but also information about treatment centers and organizations in Northeastern Ohio that can provide help How did you create and distribute the brochure The first step was compiling information I spoke with nurses at the hemophilia treatment center HTC at University Hospitals of Cleveland They made sure the medical information was accurate Next I pulled together general facts about bleeding disorders and symptoms specific to women Lastly Mary Ann Kerr one of the founding members of the Women s Task Force provided some additional information and put it all together The brochure was distributed at the first Hemophilia Walk held in Berea Ohio in 2008 It has since been distributed at the 2009 Walk and the 2008 and 2009 NOHF annual meetings Nurses at the HTCs in Akron and Cleveland Ohio have distributed

    Original URL path: http://www.hemaware.org/story/spread-word (2016-02-18)
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  • Hemophilia Genotyping for All | HemAware
    order to adequately assess the inhibitor risk for a new product we must know both the expected baseline rate of inhibitors and all the risk factors for inhibitor development This information can best be learned through surveillance of an at risk population To learn more about inhibitors and the reasons they develop the Centers for Disease Control and Prevention CDC is conducting a study of inhibitors as part of its surveillance program called the Universal Data Collection UDC System People with hemophilia at certain treatment centers around the country are eligible to join the study which involves keeping close track of their infusions and providing a blood specimen for inhibitor testing at least once per year Participants also are genotyped at the CDC Results are provided to their physician More than 800 people have been enrolled in the CDC s inhibitor study and genotyped While this is only a small portion of the people with hemophilia in the US this project demonstrates the feasibility of current genotyping strategies and the value of both genotyping and prospective surveillance for inhibitors in better understanding who gets inhibitors and why and then developing effective inhibitor prevention The National Hemophilia Foundation s planned initiative to genotype the community could lead to the day when all people with hemophilia in the US know their genotype Participation in this initiative benefits both the individual and the bleeding disorders community You can find bleeding disorders data on the CDC s Web site Connie Miller PhD is a research biologist and J Michael Soucie PhD is associate director for science at the Centers for Disease Control and Prevention in Atlanta View the discussion thread Life Stages Infants Children Teens Young Adults Adults Aging Research Treatment Hemophilia A B von Willebrand Disease Rare Bleeding Disorders HIV Hepatitis C Surgery

    Original URL path: http://www.hemaware.org/story/hemophilia-genotyping-all (2016-02-18)
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  • Von Willebrand Disease and Menorrhagia Drugs Approved | HemAware
    noted that the drug is about five times more potent than Amicar which is now available in the US In an April 2009 study published in the British Journal of Haematology Kouides and colleagues at the Centers for Disease Control and Prevention showed that standard dose tranexamic acid reduced menstrual blood flow and improved quality of life in women with menorrhagia and an underlying bleeding disorder It was compared with intranasal DDAVP Stimate Although Stimate also showed benefit improvement was statistically more significant with the tranexamic acid Kouides says the drug has few marked side effects Another VWD Option Wilate is a newly developed von Willebrand factor coagulation factor VIII concentrate to treat spontaneous and trauma induced bleeding episodes in people with severe VWD and in those with mild or moderate VWD when desmopressin is ineffective Wilate is made by Swiss pharmaceutical manufacturer Octapharma The FDA approval of Wilate makes this the first and only replacement therapy developed and manufactured specifically for VWD according to Craig Kessler MD professor of medicine and pathology and director of the Division of Coagulation at Georgetown University Hospital in Washington DC He is also chair of the National Hemophilia Foundation s Medical and Scientific Advisory Council MASAC Wilate is a next generation treatment option for patients with von Willebrand disease Wilate joins Humate P and Alphanate as options for people with VWD who need to infuse The more pharmaceutical companies supplying products enriched with VWD factor the better for the caregiver and the patient Kouides says With this addition it is nice to know there are unlikely to be supply issues for people who need it Although both drugs received FDA approval late in 2009 they were not yet available as of spring 2010 Once drugs are approved it takes time to meet the

    Original URL path: http://www.hemaware.org/story/von-willebrand-disease-and-menorrhagia-drugs-approved (2016-02-18)
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  • Washington Days 2010 | HemAware
    plight of Rich Pezzillo a staffer with hemophilia and an inhibitor I appreciate how poorly served people with chronic conditions are in the present system Whitehouse said We need a healthcare bill to serve the people of America better This is a cause you are so justifiably passionate about While many believe a final healthcare bill may be impossible one senator Sen Byron Dorgan D ND was willing to pursue other avenues The bill he co sponsored with Sen Olympia Snowe R ME and Rep Anna Eshoo D CA could be attached to an existing bill The Health Insurance Coverage Protection Act S 442 H R 1085 was proposed last year We will try to put it in an appropriations bill We ve got to get to a conclusion that eliminates these limits Dorgan said Members of the Great Lakes Hemophilia Foundation in Milwaukee met with Rep Tammy Baldwin D WI to thank her for circulating a Dear Colleagues letter requesting increased funding from the CDC for HTCs After hearing stories of looming lifetime caps and the necessity of HTCs Baldwin offered encouragement Please stay passionate she said For many community members Washington Days is a must no matter the distance Lisa Maxwell of Great Falls Montana attended her first event last year the day before her son Lane then 13 hit his first lifetime cap He has about six years until he reaches the next one Eliminating lifetime caps is my biggest concern Maxwell says She found Sen Jon Tester D MT to be open to hearing her son s story Within one month of our visit last year he had signed onto the Dorgan bill This year she shared with Tester a monthly bill of 25 000 for Lane s factor product The senator shook his head in

    Original URL path: http://www.hemaware.org/story/nhf-community-meets-congress (2016-02-18)
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