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  • Pain Medication Safety | HemAware
    pain can suffer from depression Michna says That s a normal response Although some patients benefit from medication to treat it depression does not always need a prescription he adds Doherty has experienced depression related to her chronic pain Pain definitely changes your life she says She felt especially down when she was first diagnosed but has learned to make peace with her circumstances But no matter how she is feeling on a given day Doherty says it is her 15 year old daughter whose presence encourages her to stay strong I have to show her that even if you re in pain you have to learn to deal with it she says You ve got to keep going There is life after pain Avoiding complications Women with bleeding disorders typically should not take most NSAIDs as they carry a risk of gastrointestinal bleeding Instead ask your healthcare provider about safer remedies COX 2 inhibitors such as celecoxib Celebrex and meloxicam Mobic are types of NSAIDs that may be suitable for people with bleeding disorders says Michna They have less of an effect on platelets and sometimes can be safely used he explains But these medications like others carry side effects so ask your doctor about the best option for you Frances Cabot 62 retired office manager from Scottville Michigan has been careful about the pain medications she takes since 2003 when she was diagnosed with type 1 VWD Total knee replacement surgery left her with lingering knee pain She also has knuckle pain from arthritis To ease the aches she uses acetaminophen which is not an NSAID It takes about a half hour or so and then I feel better says Cabot I don t use it every day primarily just at night so I can sleep Cabot recently learned that taking acetaminophen for extended periods and at more than the recommended dose can cause liver damage Acetaminophen overdoses are the leading cause of acute liver failure in the US according to the Harvard Medical School A lot of people in our community feel that acetaminophen is safe says Witkop But Maximum Strength Pamprin and Midol Complete Menstrual Relief each contain 500 mg of acetaminophen So heed the warning by the US Food and Drug Administration FDA to not take more than 4 000 mg of acetaminophen in a 24 hour period Ask your doctor about the dosage that is right for you and how long to take it Although opioids such as Vicodin hydrocodone and OxyContin oxycodone may be warranted for some patients they should not be the first treatment for chronic aches Doctors should prescribe nonopioid medications first says Michna In those very resistant cases opioids can be an option but there needs to be a thorough evaluation of the patient That means people with a history of substance abuse or misuse may not be candidates Overdoses often happen in people who are taking these medications illegally and not using them in the way that they are

    Original URL path: http://www.hemaware.org/story/pain-medication-safety (2016-02-18)
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  • Head Bleeds and Hemophilia
    his memory is intact and if his attention span has been affected Brain Anatomy 101 The brain and its protective membranes are contained in an enclosed space by the skull So any irritation such as bleeding or swelling can cause the brain to expand and pressure to build Subdural hemorrhage is the type usually seen with trauma says Young A child who is riding a bicycle or skateboard without a helmet and hits the pavement at a relatively high speed can sustain this type of head bleed If it is a large enough hemorrhage it could create enough pressure in the brain that other parts could be affected says Young Subdurals have the potential to lead to brain damage in the local area where the bleeding is occurring The damage could include paralysis vision loss difficulty speaking weakness on one side of the body and strokelike symptoms For significant subdural hemorrhage neurosurgery might be required Since the bleeding is in an enclosed space a neurosurgeon may need to make a hole in the skull or remove part of it to allow the pressure to be released says Young That gives the brain needed space to expand and restores blood flow to other areas of the brain In addition the neurosurgeon may try to remove the blood that is causing irritation and damage Spontaneous bleeds into the head tend to be intracerebral within the brain tissue itself says Young They can result from arteriovenous malformations congenital weaknesses in blood vessels in the brain that cause them to rupture resulting in bleeding and widespread swelling Because the bleed is deeper in the brain it is not as easily accessed You may still need the neurosurgical procedure to relieve the pressure but you re not going to be able to remove the blood Young says Significant local brain damage can result from this type of head bleed Precaution and Prevention Protecting the head seems logical especially in toddlers with severe hemophilia who are learning to walk But not all healthcare providers subscribe to the helmet every head philosophy If a child is on prophylaxis three times a week and the risk of intracranial hemorrhage is very small then there s no need to wear a helmet says Young It stigmatizes him But Young makes exceptions For a toddler with an inhibitor engaging in an activity that may lead to trauma like going to the playground I would suggest a helmet He also recommends helmets and protective gear for activities that have a high rate of injury in the general population Any child who s riding a bicycle skateboard or scooter needs to wear a helmet says Young In many states it s a law Helmet rules apply to all children with or without hemophilia Recommending helmets for children with hemophilia who want to play certain sports depends on several issues says Young For older children playing sports like baseball and soccer I don t recommend wearing helmets unless they re required for the sport such as batting in baseball or softball But a child with hemophilia who wants to be a soccer goalie needs to take extra precautions In this situation having him wear a helmet is not a bad idea Choosing safe sports is vital for children with hemophilia especially where the risk of head bleeds is heightened NHF s Sports and Exercise booklet is a useful guide for parents They should look at it say Young In it sports and activities are ranked by risk of injury on a color coded scale from 1 to 3 where 1 is safe and 3 is dangerous and not recommended by NHF There are only a handful of sports I consider taboo tackle football wrestling boxing ice hockey and lacrosse says Young For high level competitive sports such as soccer he talks with patients about preventive strategies I tell them that if they re going to play competitively there is a risk of blunt trauma of butting heads with an opponent The preventive strategy is that they have to infuse factor before the game says Young That may mean daily infusion throughout the season That way the player has adequate factor product in his system virtually the same as other players on the field and the risk of a head bleed is decreased Teens Will Be Teens Parents of teens with bleeding disorders would like to believe that Jared will never ride a scooter without a helmet and that Jenny will always wear a seatbelt when she catches a ride with friends But teenage independence and rebellion manifest in many forms one of which is risk taking Injuries tend to happen when teens are doing things they know their parents don t want them to do but they want to be one of the guys or girls says Nancy Roy MSN FNP C nurse coordinator at the Hemophilia Center of South Carolina an HTC in Columbia In younger teens it can be riding bikes without helmets or skateboarding without protective gear In older teenagers it might be a night of drinking with friends They bang their head are unaware of it and don t come into the clinic until a couple of days later By that time they have a major head bleed Communication and education are essential components of head bleed prevention says Roy I try to make things as nonthreatening as possible such as using the American Academy of Pediatrics AAP guidelines she says That way if a child knows that this is something that s recommended for everybody regardless of their hemophilia it does make it a bit more acceptable See sidebar Using Your Head Choosing Safe Sports and Activities The HTC staff encourages open communication with patients before children hit the teenage years That way parents can tell their children to call the HTC and see if the sport or activity is approved We try to have time alone with the teen so they can tell us anything they want

    Original URL path: http://www.hemaware.org/print/210 (2016-02-18)
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  • Head Bleeds and Hemophilia | HemAware
    affected says Young Subdurals have the potential to lead to brain damage in the local area where the bleeding is occurring The damage could include paralysis vision loss difficulty speaking weakness on one side of the body and strokelike symptoms For significant subdural hemorrhage neurosurgery might be required Since the bleeding is in an enclosed space a neurosurgeon may need to make a hole in the skull or remove part of it to allow the pressure to be released says Young That gives the brain needed space to expand and restores blood flow to other areas of the brain In addition the neurosurgeon may try to remove the blood that is causing irritation and damage Spontaneous bleeds into the head tend to be intracerebral within the brain tissue itself says Young They can result from arteriovenous malformations congenital weaknesses in blood vessels in the brain that cause them to rupture resulting in bleeding and widespread swelling Because the bleed is deeper in the brain it is not as easily accessed You may still need the neurosurgical procedure to relieve the pressure but you re not going to be able to remove the blood Young says Significant local brain damage can result from this type of head bleed Precaution and Prevention Protecting the head seems logical especially in toddlers with severe hemophilia who are learning to walk But not all healthcare providers subscribe to the helmet every head philosophy If a child is on prophylaxis three times a week and the risk of intracranial hemorrhage is very small then there s no need to wear a helmet says Young It stigmatizes him But Young makes exceptions For a toddler with an inhibitor engaging in an activity that may lead to trauma like going to the playground I would suggest a helmet He also recommends helmets and protective gear for activities that have a high rate of injury in the general population Any child who s riding a bicycle skateboard or scooter needs to wear a helmet says Young In many states it s a law Helmet rules apply to all children with or without hemophilia Recommending helmets for children with hemophilia who want to play certain sports depends on several issues says Young For older children playing sports like baseball and soccer I don t recommend wearing helmets unless they re required for the sport such as batting in baseball or softball But a child with hemophilia who wants to be a soccer goalie needs to take extra precautions In this situation having him wear a helmet is not a bad idea Choosing safe sports is vital for children with hemophilia especially where the risk of head bleeds is heightened NHF s Sports and Exercise booklet is a useful guide for parents They should look at it say Young In it sports and activities are ranked by risk of injury on a color coded scale from 1 to 3 where 1 is safe and 3 is dangerous and not recommended by NHF There are only a handful of sports I consider taboo tackle football wrestling boxing ice hockey and lacrosse says Young For high level competitive sports such as soccer he talks with patients about preventive strategies I tell them that if they re going to play competitively there is a risk of blunt trauma of butting heads with an opponent The preventive strategy is that they have to infuse factor before the game says Young That may mean daily infusion throughout the season That way the player has adequate factor product in his system virtually the same as other players on the field and the risk of a head bleed is decreased Teens Will Be Teens Parents of teens with bleeding disorders would like to believe that Jared will never ride a scooter without a helmet and that Jenny will always wear a seatbelt when she catches a ride with friends But teenage independence and rebellion manifest in many forms one of which is risk taking Injuries tend to happen when teens are doing things they know their parents don t want them to do but they want to be one of the guys or girls says Nancy Roy MSN FNP C nurse coordinator at the Hemophilia Center of South Carolina an HTC in Columbia In younger teens it can be riding bikes without helmets or skateboarding without protective gear In older teenagers it might be a night of drinking with friends They bang their head are unaware of it and don t come into the clinic until a couple of days later By that time they have a major head bleed Communication and education are essential components of head bleed prevention says Roy I try to make things as nonthreatening as possible such as using the American Academy of Pediatrics AAP guidelines she says That way if a child knows that this is something that s recommended for everybody regardless of their hemophilia it does make it a bit more acceptable See sidebar Using Your Head Choosing Safe Sports and Activities The HTC staff encourages open communication with patients before children hit the teenage years That way parents can tell their children to call the HTC and see if the sport or activity is approved We try to have time alone with the teen so they can tell us anything they want to says Roy She is blunt she says because it is vital that she knows what they are doing I tell them Don t tell me what you think I want to hear Tell me the truth and let s start from there If a teen has had a head bleed and is on prophylaxis once he starts feeling better he may stop taking it and start taking risks says Roy Some teens have rejected her advice saying I don t care what you told me But many teens do listen to the HTC staff My experience has been that they ultimately come to the decision that

    Original URL path: http://www.hemaware.org/story/head-bleeds-and-hemophilia?quicktabs_story_page_tabs=0 (2016-02-18)
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  • Blood Clot Fibers are Surprisingly Stretchy | HemAware
    of work is important to help prevent dangerous blood clots from forming and researchers also learned some interesting facts that could someday lead to a better understanding of certain types of hemophilia As we know people with bleeding disorders do not form strong clots and then those clots don t stay in place notes Susan Lord a pathologist at the University of North Carolina at Chapel Hill and a study co author It s important to understand the strength of a clot in terms of preventing bleeding For example this study revealed that when fibrins are cross linked they stretch more than when they are uncross linked The discovery is somewhat counterintuitive because a rubber tire cross linked is less stretchy than a rubber band uncross linked This knowledge applies to patients with factor XIII deficiencies whose fibrin fibers lack the ability to cross link during the clotting process Guthold says he also was surprised to learn that a clot can only be stretched two or three times its length as opposed to the individual fibers that can be stretched four times their length The junctions of the fibers may be the weakest part of the clots not the fibers themselves he says While the study s implications for hemophilia are more long term the information could be used to treat thrombosis a condition in which a clot blocks the flow of blood through the circulatory system A company developing a device to break up blood clots using ultrasound technology has expressed interest in the findings The company is trying to understand how much force you have to apply to fibers to break them up without damaging any other tissues or blood cells says Guthold For Lord the experiment has sparked an interest in understanding more about the role of

    Original URL path: http://www.hemaware.org/story/blood-clot-fibers-are-surprisingly-stretchy (2016-02-18)
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  • Progress Made for My Life, Our Future Genotyping Initiative | HemAware
    and The Milton S Hershey Medical Center Hershey PA Puget Sound Blood Center Seattle WA Six additional pilot sites are currently in the process of IRB review as the program builds momentum toward being available nationwide My Life Our Future a campaign for progress in hemophilia is a partnership between ATHN the National Hemophilia Foundation NHF Puget Sound Blood Center PSBC and Biogen Idec Hemophilia Learn More Read the My Life Our Future cover story in the Spring 2013 issue of HemAware Get the quick facts about My Life Our Future 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 Hemaware Jr Women Women s Bleeding Disorders Carriers Watchdog Insurance Blood Safety Advocacy Community HemAware Blogs HemAware Videos HemAware Photos Chapters in Action Global Spotlight Community Voices En Español Related Most Viewed 1 Sequestration and Hemophilia Research 2 Wave of Progress 3 Genotyping for Progress 4 Package Deal 5 Probing Gene Therapy The Pros and Cons of Infusion Devices Pumping Iron Head Bleeds and Hemophilia Dogs

    Original URL path: http://www.hemaware.org/story/progress-made-my-life-our-future-genotyping-initiative (2016-02-18)
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  • Wave of Progress | HemAware
    at the Hemophilia Treatment Center of Central Pennsylvania at Penn State Milton S Hershey Medical Center Identifying a woman s carrier status can not only improve her health management but can also aid in family planning possibly improving outcomes during childbirth and delivery MLOF is preparing to launch a pilot carrier expansion in select HTCs across the country in 2015 A brighter future Though the prospect of what s to come is exciting the discoveries already made as a result of MLOF and the enrollment of more than 2 000 participants nearly half of the program s goal are impressive My Life Our Future is a true example of the hemophilia patient community s desire to drive progress and join together to make a difference says Val D Bias NHF s CEO I m confident that we re creating a brighter future for generations to come To be a voice for progress and learn how you can get involved in My Life Our Future visit MyLifeOurFuture org Together we can make knowledge hereditary Learn More Visit MyLifeOurFuture org for more information about My Life Our Future including how to find a participating hemophilia treatment center near you and to sign up to receive updates on the program Watch NHF CEO Val D Bias provide an overview of My Life Our Future at NHF s 66th Annual Meeting in Washington DC in September 2014 youtube com watch v lHI1Jvj6AV4 Read about the launch of My Life Our Future in the Spring 2013 issue of HemAware hemaware org story genotyping progress Read MASAC Recommendation 214 MASAC Recommendations on the NHF Genotyping Project for Persons with Hemophilia bit ly MASAC214 Contact HANDI NHF s information resource center Email handi hemophilia org Phone 1 800 42 HANDI Online hemophilia org Community Resources HANDI NHFs Information Resource Center Information for this article was provided by the National Hemophilia Foundation the American Thrombosis and Hemostasis Network the Puget Sound Blood Center and Biogen Idec Voices for Progress HemAware conducted the following Q A with two MLOF participants Kenny Stocker of Seattle and Guy Law of Erie Pennsylvania Vichly44 Thinkstock Q What is your hemophilia diagnosis and does anyone else in your family have the disorder Guy Law GL I have severe hemophilia A and am now partially blind because of the disorder Though I have no siblings or children with the disorder my mother and aunt are carriers My cousin has and grandfather had hemophilia as well As a result I am really close to my cousin It was helpful to grow up with someone who s about my age and I could relate to in ways I couldn t with most people Kenny Stocker KS I have severe hemophilia A which I inherited from my biological mother I am the first in my family to have the disorder I have 17 year old twins a boy and a girl neither of whom has hemophilia Q How did you learn about MLOF GL I learned about

    Original URL path: http://www.hemaware.org/story/wave-progress (2016-02-18)
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  • FDA Approves Kogenate for Hemophilia Prophylaxis | HemAware
    approval of Kogenate FS for routine prophylaxis treatment eases prescription issues Now physicians can prescribe it for young patients for on label use with clinical data to support it The new approval also makes it far more likely that the treatment will now be covered by a patient s insurance Many insurance companies will not pay for a drug if it is being used off label on the grounds that its use is experimental This can be the case even in instances where the off label use has been thoroughly studied Patients and their families have to foot the bill if their doctor recommends these kinds of treatments The approval came after the Joint Outcome Study headed by Marilyn Manco Johnson MD a multicenter US trial that included 65 boys with severe hemophilia A who were younger than 30 months at the time they entered the study Of the boys 32 were given routine prophylaxis with Kogenate while 33 were given therapy based on bleeding episodes The study published in The New England Journal of Medicine in 2007 was conducted during a 10 year period Special attention was given to the index joints that bleed most often in patients with severe hemophilia the elbow ankle and knee When the boys turned six years old joint structural outcomes and functioning were measured by physical exams radiography and magnetic resonance imaging Findings showed that 93 of the prophylactic group had normal joints versus 55 in the on demand group Learn More Visit the FDA Web site for product approval information Read Manco Johnson MJ Abshire TC Shapira AD et al Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia The New England Journal of Medicine 2007 357 535 544 View the discussion thread Life Stages Infants Children Teens

    Original URL path: http://www.hemaware.org/story/fda-approves-kogenate-hemophilia-prophylaxis (2016-02-18)
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  • CDC’s Bleeding Disorders Research Labs | HemAware
    be initiated immediately says Soucie Inhibitor Pilot Study Contrary to what one might expect though virulent viruses are not the most pressing threat to the bleeding disorders community Inhibitor s are The biggest blood safety issue acknowledged in the world for the hemophilia population is inhibitors says Soucie He observes that inhibitors would not develop at all if the underlying bleeding disorder were not treated with factor products So something about the way we re treating them what we re treating them with has to enter into it The impetus for the CDC s Inhibitor Pilot Study was a meeting with the US Food and Drug Administration FDA in 2005 Officials told the CDC that studies of new products typically involved so few patients that the FDA could not determine the causal relationship between inhibitor development and the product used When one or two people developed inhibitors did it mean that the product was worse for all patients Nobody could answer that question says Soucie The inhibitor study is being conducted at nine adult and four pediatric hemophilia treatment centers HTCs around the country So far more than 500 patients have enrolled A challenging aspect of the study is that patients are required to keep detailed treatment records What we re doing is collecting not only information on the product what it is how much they re using and how often but also what they re using it for says Soucie Is it for prophylaxis To treat a bleed Before surgery All these things have been identified as potential risk factors for developing an inhibitor And so has the product itself By taking a blood sample when a patient switches to a new product the CDC hopes to be at the forefront of prevention We ll be able to judge whether there were any changes says Miller If we do that in large enough numbers we ll pick up new occurrences of inhibitors much more rapidly than by simply collecting data The advantages of one lab overseeing all the testing are manifold The CDC can standardize the way blood is drawn and prepared It can test samples when patients first enroll a year later when they return for their annual comprehensive visit and again when they change factor products In addition it has the resources to collect data prospectively before patients develop inhibitors and compare it if and when the patients develop inhibitors Miller says a distinct line of demarcation is already being seen in regard to titers the antibody level measured in Bethesda units or BUs indicating the strength of the body s response in producing an inhibitor With people who don t have a history of inhibitors the results seem to show that they fall below an inhibitor titer of 0 5 Bethesda units We are helping establish a cut off point While Miller s lab is analyzing blood components Craig Hooper s team is analyzing the DNA in genes looking for mutations Gene mutations which are alterations

    Original URL path: http://www.hemaware.org/story/research-destroy (2016-02-18)
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