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  • Young Women Spread the Word About Bleeding Disorders in Women | HemAware
    She vowed to always speak up about it In the past Mattson has shared the science behind bleeding disorders with students at her alma maters explaining how bleeding disorders are passed down genetically and which ones are carried on the sex chromosome Tests administered after her presentations show that students are getting it and enjoying the activity When people know someone who has a bleeding disorder or even suspect they know someone who has it it makes it more real than it would be otherwise Mattson says Reaching the unreached Leslie Situ 21 used to watch her father lie in bed for days suffering bleeds caused by undiagnosed severe hemophilia A When her family moved to the US from China Situ s father was diagnosed Then she discovered she was a carrier Project Red Flag allows Situ to tell groups in her Oakland California neighborhood that bleeding disorders go beyond hemophilia The experience has reinforced her determination Sometimes we want to start with huge goals Situ says But if we make small goals along the way they re a lot more feasible and we can move up from there There s no limit once we take the first step Reaching women Bervis Mattson and Situ became friends while members of the National Hemophilia Foundation s National Youth Leadership Institute They have since joined the Project Red Flag Task Force and the women talk on the phone regularly just to touch base and keep each other on track Bervis is starting her Project Red Flag work in what was once her favorite high school class dance She s excited to share her experience with people who may never have heard of von Willebrand disease What I can do though is help other women find out about their bleeding disorders so they

    Original URL path: http://www.hemaware.org/story/young-women-carry-flag (2016-02-18)
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  • Pregnancy Planning and Bleeding Disorders
    the amniotic sac that surrounds the fetus to test for abnormalities We ve heard patients say their ob gyns have told them prenatal testing is too dangerous that they could bleed to death says Kouides With proper precautions however the tests should be safe for the woman But both procedures carry a small risk of miscarriage The bleeding disorder shouldn t be an excuse not to do it if the patient really wants it Kouides says Some women he points out choose to terminate their pregnancies if testing uncovers a severe bleeding disorder Parents who want to ensure that their child won t have a severe bleeding disorder can consider preimplantation genetic diagnosis Konkle says The process involves in vitro fertilization Eggs are fertilized in a lab and early embryos are then tested for the specific bleeding disorder mutation This allows implantation of an unaffected embryo That process carries with it all the issues related to in vitro fertilization what you have to go through the costs and risks she says Steps for Living Bleeding Disorders in Women Childbirth and Beyond Delivery is the time of greatest concern says Andra H James MD director of the Women s Hemostasis and Thrombosis Clinic and associate professor of obstetrics gynecology Division of Maternal Fetal Medicine at Duke University in Durham North Carolina The goal should be to avoid prolonged labor and the use of forceps or vacuum extraction The least risk to the woman would be if the baby comes easily through the vagina James says The greatest risk is if the woman goes through labor and then winds up with a C section Because babies affected by bleeding disorders have a 4 risk of brain bleeds when born vaginally she recommends cesarean delivery for babies known to have a bleeding disorder or potentially affected babies Postpartum bleeding is another concern Women with type 2B VWD are at special risk They may develop thrombocytopenia a disorder in which the blood contains an insufficient number of platelets and experience severe hemorrhaging following childbirth Although obstetricians are on heightened alert for hemorrhages in all women who have just given birth new parents should also contact their HTC as soon as possible We often joke that right after they call their parents to announce the birth they should call us says Kouides He will visit postpartum women to help assess bleeding and factor levels The pediatric hematologist also gets involved at this point If the delivery was traumatic for instance the infant may have bleeding in his brain Or the heel stick used to collect blood for routine screenings may cause bleeding The pediatric hematologist shares recommendations about cord blood testing and other matters with the obstetric team says Amy L Dunn MD assistant professor of pediatrics at Emory University School of Medicine and the Aflac Cancer Center and Blood Disorders Services at Children s Healthcare of Atlanta Cord blood testing in which a blood sample is drawn from the umbilical cord immediately after birth

    Original URL path: http://www.hemaware.org/print/427 (2016-02-18)
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  • VWD Summit Highights
    Indeed the rate of spontaneous bleeding may be low even in patients with severe deficiency at about the level experienced by patients with moderate hemophilia Diagnosis and reporting Diagnosis of VWD is not straightforward especially for those with type 1 or people with low levels of VWF and mild bleeding Further VWF levels can fluctuate in response to age exercise pregnancy or stress skewing test results Another confounding factor is blood type VWF levels in people with type O blood are normally lower compared with other blood types Patients themselves often underreport their symptoms Women don t disclose their menorrhagia heavy menstrual bleeding because of fear of stigma or lack of awareness that it could be the symptom of a bleeding disorder Further there is no consensus among physicians on whether or in what specific circumstances VWD testing should be a standard screening tool to determine the underlying cause of menorrhagia Further diagnosing VWD in men is tricky VWD is typically unobserved in males except in cases of life threatening bleeding events stated the report Opportunities to diagnose men with VWD are missed because if their symptoms are mild to moderate they can be dismissed ignored or attributed to other causes Compounding the problem most primary care physicians and other providers do not see patients with bleeding disorders and are not trained to recognize the symptoms of VWD Their unfamiliarity with testing protocols leads to even more missed diagnoses said the report The Lewin paper mentioned the use of bleeding scores BS to identify people whose risk of severe bleeds could warrant on demand or even prophylactic therapy regardless of their VWD type The report stated The treatment approach for VWD should be personalized for each patient depending on the type and severity of VWD as well as the nature and site of bleeding Clinical practice guidelines The report mentioned the use in the US of the NHLBI practice guidelines for VWD published in 2008 Although the guidelines provide detailed information on diagnostic recommendations lab testing making a diagnosis and management of VWD they do not include psychosocial issues or care coordination delivery issues involving HTCs Further the NHLBI acknowledges that the guidelines need to be updated Assessment of care Studio Annika Thinkstock Statistics from the HDS show that from 1996 2010 there was a 148 increase in the number of patients with VWD using HTC services Their numbers nearly tripled from 5 326 to 13 239 The increase in VWD patients particularly among females was the largest source of growth of HTCs during this time the report stated Not surprisingly of the women and girls seen at HTCs in 2010 80 had VWD How women and girls feel about the care received at HTCs was also documented In anecdotal reports patients with VWD felt their care was insufficient and that providers treated them as lower in priority than their patients with hemophilia As older hematologists retire and other newly trained physicians are drawn more to careers in oncology than

    Original URL path: http://www.hemaware.org/print/1293 (2016-02-18)
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  • Healthier Vacations
    transportable exercise equipment in their luggage such as elastic resistance bands or small dumbbells Another essential item to pack is factor product If you need it at home before you exercise you will also need it when you are away Herman Hilker strongly advises that you talk about your travel plans with the physical therapist who helped you devise your exercise routine Together you can determine which are the best safest and most practical ways for you to continue exercising while away from home People with bleeding disorders can range from those who can do just about anything to others who have little range of motion says Herman Hilker It is so important that any recommendations you follow have been made for you specifically Steps for Living Maintaining a Healthy Body While You Are Away Many hotels have exercise facilities making it easy to work in your workout while staying there Herman Hilker advises her patients to do their best to replicate their home exercise routine Don t start anything brand new she says Stick with what is familiar That means using the stationary bike rowing machine or whatever equipment has been working for you Otherwise you may put yourself at greater risk of a bleed by using a machine that strains a particularly sensitive joint or muscle Try to pick a hotel that offers a swimming pool and pack a swimsuit Swimming is a low impact exercise that puts minimal stress on joints says Herman Hilker If you are staying at a hotel that lacks a gym or a pool there are other ways to get exercise Try to make exercise relevant to your travel plans Herman Hilker advises See sites that you can walk to Park farther from them than you have to Go for walks on the

    Original URL path: http://www.hemaware.org/print/214 (2016-02-18)
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  • Healthier Vacations With Hemophilia | HemAware
    motion says Herman Hilker It is so important that any recommendations you follow have been made for you specifically Steps for Living Maintaining a Healthy Body While You Are Away Many hotels have exercise facilities making it easy to work in your workout while staying there Herman Hilker advises her patients to do their best to replicate their home exercise routine Don t start anything brand new she says Stick with what is familiar That means using the stationary bike rowing machine or whatever equipment has been working for you Otherwise you may put yourself at greater risk of a bleed by using a machine that strains a particularly sensitive joint or muscle Try to pick a hotel that offers a swimming pool and pack a swimsuit Swimming is a low impact exercise that puts minimal stress on joints says Herman Hilker If you are staying at a hotel that lacks a gym or a pool there are other ways to get exercise Try to make exercise relevant to your travel plans Herman Hilker advises See sites that you can walk to Park farther from them than you have to Go for walks on the beach And take the stairs rather than the elevator whenever possible Finally no matter what you do don t forget to keep a water bottle beside you When traveling you need to make sure you stay properly hydrated she says Travelers tend to be less vigilant about that sort of thing Welcome Home What happens if despite your best intentions and careful planning you leave your exercise routine at home and take a few weeks off Aside from feeling a tad bit guilty you might also notice that you are a little stiff when you return That s normal But it s also a sign

    Original URL path: http://www.hemaware.org/story/healthier-vacations?quicktabs_story_page_tabs=0 (2016-02-18)
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  • Pain Medication Safety
    on the individual his or her individual condition prior history all of that comes into play he says Our goal as doctors is to help you manage your pain Further women are more likely to have chronic pain to have chronic conditions such as fibromyalgia and migraines and are more likely to experience chronic conditions at the same time research finds We have a prevalence of women in pain centers as opposed to men says Michna This may occur in part because women are more likely to reach out for treatment Physical pain can affect your mental state too Patients suffering from chronic 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

    Original URL path: http://www.hemaware.org/print/1082 (2016-02-18)
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  • Send page by email | HemAware
    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 Need info Ask NHF Contact HANDI NHF s resource center for additional information on bleeding disorders Home Glossary Site Map Donate Advertise Privacy Policy Subscribe Contact Us Life Stages

    Original URL path: http://www.hemaware.org/printmail/135 (2016-02-18)
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  • Blood Clot Fibers are Surprisingly Stretchy
    times their length and still return to their original shape without permanent damage That s something play dough and plastic bags could never do This particular study published in Science magazine Liu W et al Fibrin fibers have extraordinary extensibility and elasticity Science 2006 313 634 was designed to help scientists understand more about the basics of clotting The ultimate goal in this kind of work is building a good model of a blood clot and to really be able to understand its mechanical behavior Guthold says We want to get a good foundation to understand why clots behave the way they do and why they break This kind 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

    Original URL path: http://www.hemaware.org/print/135 (2016-02-18)
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