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  • Woman With a Bleeding Disorder Elected to NHF Board | HemAware
    to ensure that the healthcare community understands that women can and do have bleeding disorders and that treatment can improve their quality of life While some people with bleeding disorders are diagnosed and treated early many women today are neither diagnosed nor even recognize that their symptoms may be treatable Birdwhistell says One goal of Victory for Women is educating primary care providers physicians nurses nurse practitioners physician assistants and ob gyns who women see on a regular basis Unless primary care providers are trained to recognize symptoms they won t be able to diagnose treat or refer Birdwhistell says Victory for Women also seeks to reach out to young women who are symptomatic but have not yet been diagnosed as well as support women who have been diagnosed through support of chapter and HTC efforts One project helping achieve greater awareness is the 2011 Victory for Women calendar which features women with bleeding disorders Birdwhistell appears in the calendar photographed by well known New York City nightlife photographer Patrick McMullan His sister died from complications of a bleeding disorder in the 1970s See Iron Butterfly HemAware Fall 2010 page 20 The calendar is a recognition of what women have been through and the quality of life that is possible if people are given effective treatment Birdwhistell says Birdwhistell acknowledges the progress that has been made on the medical side of this issue However she knows it will take a lot more effort before the bleeding disorders community can achieve the widespread awareness it anticipates The goal is to get providers educated about this so they can start taking their patients complaints seriously and make referrals to hematologists for work ups and treatment says Birdwhistell She also wants to encourage women to start talking about their symptoms and recognize that

    Original URL path: http://www.hemaware.org/story/forward-march (2016-02-18)
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  • Victory for Women | HemAware
    prolonged bleeding after surgery or childbirth and unnecessary procedures like hysterectomies It may also help others in the extended family get diagnosed One of the first items on the Victory for Women to do list is to create an awareness campaign which will target three key audiences young women ages 18 to 25 mothers of girls ages 13 to 18 and healthcare and education professionals Ronia Cole of Clinton Township Michigan has moderate VWD To develop an effective campaign NHF in collaboration with the CDC and Harris Interactive will conduct an online survey of approximately 1 200 women about menstrual bleeding and bleeding disorder symptoms Our goal is to understand knowledge attitudes health behaviors and experiences of our intended audience 18 to 25 year old women says Kathleen Roach MPH MBA NHF regional director of chapter services She is leading the Victory for Women initiative Targeted health communications will not only raise awareness and educate young women but also influence them to take action if indicated such as asking their physician about their symptoms NHF will develop a plan that disseminates information to women nationwide In addition chapters will be able to use campaign materials at their events such as the Hemophilia Walks The chapters can do a lot to piggyback on the attention we hope we bring to the issue Flax says They re the on the ground folks in the community providing services connecting people to resources and working with the doctors This type of outreach will help make the Victory for Women initiative successful Steps for Living Bleeding Disorders in Women Learn More Learn more about the Victory for Women initiative Annual Meeting Activities Victory for Women will debut at the National Hemophilia Foundation s NHF s Annual Meeting November 11 13 in New Orleans The new

    Original URL path: http://www.hemaware.org/story/victory-women (2016-02-18)
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  • Abnormal Bleeding | HemAware
    antigen and activity levels into the acceptable range For a patient with a level of 50 60 but in the setting of a really good story a history of bleeding and a strong family history of bleeding disorders I am going to repeat those tests making sure everything is optimized for the best results Ma says I may bring a patient back to be tested again right before menstruating when hormone levels are lower or take her off birth control pills or HRT hormone replacement therapy for a month or two before repeating the test says Ma Also if a patient has just run up the stairs or is nervous those factors can increase levels as well I will bring her back on another day make sure she takes the elevator and try to keep her calm She adds that some of her colleagues especially those working with children will keep patients in a dark quiet room or even use biofeedback to reduce stress before testing Another factor that can affect VWD test results is where the testing is done It is best to get the tests done by a hematologist preferably one associated with a hemophilia treatment center Ma says Commercial labs or clinics may not use optimal methods for handling blood If it sits outside in a metal box the sample could be messed up before it gets to the lab Getting Answers Diagnosis of VWD typically takes three to four weeks the findings will show the type and severity of VWD There are three different types of VWD 1 2 and 3 In addition type 2 has several subtypes In type 1 the VW protein is normal but is produced in decreased amounts levels range from 20 to 50 Symptoms are typically mild In type 2 the VW protein is abnormal Patients with type 3 VWD have very low levels of VWF activity and antigen typically less than 10 and low factor VIII levels They typically have severe symptoms The levels of von Willebrand factor antigen and activity the ratio between them and the multimeric analysis help distinguish among the various subtypes of type 2 VWD The multimeric analysis is a study of the makeup of the VW protein and is abnormal in type 2A and 2B Type 2A and 2B will have very low levels of activity but the antigen levels may be normal even if the multimeric analysis is abnormal Type 1 should be treated with DDAVP or desmopressin acetate a synthetic hormone released through a nasal spray according to the National Hemophilia Foundation s Medical and Scientific Advisory Council MASAC recommendations on VWD treatment DDAVP increases the levels of FVIII and VWF circulating in the blood for up to eight hours after administration People with types 2A 2M and 2N VWD should be treated with DDAVP if they have responded positively to a trial of DDAVP People with subtypes 2B and type 3 VWD and those with types 1 2A 2M and 2N who

    Original URL path: http://www.hemaware.org/story/abnormal-bleeding (2016-02-18)
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  • DDAVP for von Willebrand Disease | HemAware
    hemostasis and thrombosis for the New Jersey Regional Hemophilia Program in New Brunswick DDAVP is a synthetic analogue of vasopressin a naturally occurring hormone in the body It carries no risk of infectious disease Vasopressin helps balance the amount of water and salt in the body The medication is recommended on an individual basis for a variety of conditions says Barbara Konkle MD Penn Comprehensive Hemophilia Program University of Pennsylvania Medical Center in Philadelphia She may prescribe the spray for women prone to any of the following frequent nosebleeds serious bruising or heavy menstrual periods menorrhagia Additionally DDAVP is used prior to procedures involving mucous membranes such as dental work for home treatment of minor injuries and for minor or moderate surgeries However individual response should first be assessed in a preliminary treatment trial Konkle says Taking a Break Subcutaneous administration of DDAVP was used occasionally before intranasal dosing was available says Konkle She finds patients respond quicker to intravenous administration than to intranasal it is often a better choice for in patient surgery Outpatient procedures usually work well with intranasal administration Konkle says Highly concentrated Stimate for bleeding disorders is delivered in the adult dose of two sprays of 150 micrograms or 300 micrograms total patients weighing less than 50 kilograms 110 pounds receive one 150 microgram squirt The rule more is better does not apply here Michaels says Using the medication for a short time results in a progressively lowered response For example on the first day a big boost of VWF level may occur but on the second day it s lower and so on That diminishing response called tachyphylaxis mandates a break between consecutive doses Michaels says Since responses are always variable Michaels says they should be continually monitored Some patients enjoy complete and total correction of their VWF levels while some achieve symptomatic relief Conserving Water The water retention properties of DDAVP must be carefully managed Retention of free water by the kidneys according to Konkle causes hyponatremia an abnormally low concentration of sodium in the blood which could result in a seizure She advises people not to drink more than 24 ounces of fluid in 24 hours Further if a patient is undergoing surgery and receiving intravenous DDAVP Konkle asks surgeons to keep IV fluid administration to a minimum The risk of developing low blood sodium is thought to be greater in the very young and very old so DDAVP is used more cautiously in those groups Konkle says Taking DDAVP is not the time to drink those requisite eight glasses of water adds Michaels In general people will begin to urinate one to eight hours after administration of DDAVP Once urination occurs the risk of free water retention is decreased Side effects of DDAVP may include headaches nausea and facial flushing or redness says Konkle Citing the convenience and portability of the medication Lily says she usually sprays before a dance as a preventive measure She and her partner have won some competitions

    Original URL path: http://www.hemaware.org/story/ddavp-von-willebrand-disease (2016-02-18)
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  • All About Nosebleeds | HemAware
    and scrapes regular nosebleeds don t usually require an infusion of factor unless the person has severe hemophilia Steps for Living Treatment Basics Additionally more patients have been using Nosebleed QR says Munn referring to an over the counter topical powder that retards bleeding when applied directly to the nostril with a special swab The powder forms a protective scab There is also a version of the product for children For many with bleeding disorders preventing nosebleeds is a matter of diligence I am supposed to use saline nasal spray or gel at least once a day and use a humidifier year round What I actually do is use saline nasal spray if I notice I am getting frequent nosebleeds and use a humidifier at night during the winter says Megan Procario 20 a junior at the University of Pittsburgh who has von Willebrand disease type 2A and experiences frequent nosebleeds These preventive measures help somewhat to reduce the number of nosebleeds I have in the winter At the start of any nosebleed I apply pressure to my nose occasionally checking for clots she adds If the bleeding doesn t stop in about 15 minutes I use Stimate nasal spray and continue to apply pressure until the bleeding stops If that doesn t work her next step is to infuse with factor Aside from pressure and a cold compress to the nose there are other solutions for people with hemophilia who experience frequent severe nosebleeds including the use of Amicar a drug that blocks the breakdown of clots It can be injected or taken by mouth during bleeding treatment Procario says she takes Amicar if her nosebleeds are severe or frequent and for prevention Always discuss treatment options with your doctor or hematologist if your nose bleeds become more frequent

    Original URL path: http://www.hemaware.org/story/all-about-nosebleeds (2016-02-18)
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  • Von Willebrand Disease | HemAware
    ages of 18 and 25 read more Two Medications Approved For Von Willebrand Disease Menorrhagia By Martha Frase 04 20 2010 Lysteda is used to treat heavy menstrual bleeding common in women with von Willebrand disease VWD and Wilate is for bleeding in all types of VWD read more Sports and Von Willebrand Disease By Lisette Hilton 03 24 2010 People with all types of bleeding disorders including von Willebrand disease and even the most severe types of hemophilia should get some form of exercise read more Educating Gynecologists By Heather Boerner 01 14 2010 The first time doctors told Sherri Revard that she couldn t have a bleeding disorder because she was a girl she was 5 years old and had just had her tonsils out read more Young Women Carry the Flag By Heather Boerner 01 14 2010 Hematologists told her she couldn t have a bleeding disorder After all she s a woman read more Contraceptive Helps Decrease Bleeding in Women By Patrick Hayes 01 13 2010 There is good news for women with bleeding disorders looking for a new option in contraception read more Study to Examine Postpartum Factor Levels By Patrick Hayes 01 06 2010 The study is the first of its kind on a national level and the results could go a long way toward a better understanding of the physiology of VWD after childbirth read more von Willebrand Disease Treatment Guidelines By Kurt Ullman 12 18 2009 VWD is the most common bleeding disorder an estimated 1 2 of the US population have it read more Bleeding Disorders May Cause Heavy Periods By Kurt Ullman 12 18 2009 Heavy menstrual bleeding menorrhagia is a common problem for women during their reproductive years read more First Decade Defines National Hemophilia Foundation s Women s

    Original URL path: http://www.hemaware.org/topics/von-willebrand-disease?page=1 (2016-02-18)
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  • Inherited Platelet Disorders | HemAware
    bleeding They can also have this psychological burden because they can go for years with no one really understanding why they have such heavy periods Diagnosing Platelet Disorders While infections or use of medications like aspirin or Advil can trigger platelet dysfunction later in life Bernard Soulier Glanzmann thrombasthenia and storage pool disorders are all inherited That s typically a surprise to couples unless there has been a family history of bleeding disorders says Valentino Many of these disorders are what we call autosomal recessive meaning that both parents carry the trait but don t manifest the disorder he says That s why these disorders which affect both boys and girls are more common in cultures with individuals with similar genetic backgrounds he explains Diagnosing an inherited platelet disorder isn t easy even when symptoms prompt a visit to the doctor or hospital For one thing healthcare professionals outside an HTC may not suspect platelet disorders When you re seeing people who aren t trained to look for them you may go for quite a long time without anyone understanding the severity of your problem says Jennifer Maahs MSN PNP a hemophilia nurse practitioner at the Indiana Hemophilia Thrombosis Center in Indianapolis They might order a platelet count but that won t help with a diagnosis if a person has a normal number of platelets that aren t functioning properly she says Even when providers are looking for platelet dysfunction they may not come up with a definitive answer It takes a specialized laboratory to do platelet aggregation tests and there is no one laboratory test for all inherited platelet disorders Maahs explains It can be especially hard to diagnose specific problems when they occur on the interior rather than exterior of the platelet We don t have any means other than in research labs to go in and figure out the internal workings of the platelet Maahs says It s like a little factory inside the platelet We can look at the output to see if it s working like we think it should but if it s not we don t know why Treating Platelet Disorders Fortunately the treatment for platelet disorders is generally the same no matter what the variety of inherited condition Most people don t need treatment on a day to day basis Valentino says Bruising one of the most common symptoms doesn t require any treatment at all unless the bruises are very painful or impair function In those cases the treatment is usually ice or painkillers If symptoms are severe antifibrinolytic drugs that prevent clots from breaking down DDAVP and other medications can help DDAVP is a synthetic version of a hormone that stimulates the release of von Willebrand factor and factor VIII Women and girls may be prescribed birth control pills or other hormonal suppressive medication to control excessive menstrual bleeding They may also need iron replacement to treat anemia caused by prolonged blood loss over time Individuals with inherited platelet disorders

    Original URL path: http://www.hemaware.org/story/inherited-platelet-disorders (2016-02-18)
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  • Factor VII Deficiency | HemAware
    is crucial because according to the study authors people with FVII deficiency have a good prognosis and a long life expectancy when they receive treatment Fresh frozen plasma and prothrombin complex concentrates were used in the past but both present a higher risk of potential complications than the presently accepted therapy recombinant factor VIIa Only one recombinant factor VIIa NovoSeven is available at this time Pipe Shapiro and Guerrera all consider it the preferred treatment option although a standard treatment schedule has yet to be defined one more reason the IRF7 Study Group proposes future clinical trials Although NovoSeven was originally approved by the FDA to treat inhibitor s in people with hemophilia A and B it received approval for treating FVII deficiency in 2005 Doctors were using NovoSeven for FVII deficiency even before 2005 though Peltier has kept it handy for the past seven years or so and it helped control bleeding during knee surgery Even if she only uses it twice a year knowing that she has a safety net expands her freedom I ve taken it with me to South Africa Israel and other places Peltier says I haven t always had to use it but knowing it s there makes a difference If it weren t for inhibitor patients it wouldn t even be available It s a windfall for me Peltier s use of NovoSeven for infrequent bleeding episodes and surgical purposes exemplifies one typical use Guerrera s infant patients illustrate another Although prophylaxis is not a common treatment for factor VII deficiency it is used in infants with severe deficiency But there is room for improvement For example Guerrera notes that the large vial size of NovoSeven ideally suited for its original purpose of treating inhibitors leads to excessive waste up to 85 of a very expensive vial when treating an infant Although there is more work to be done Peltier appreciates the fact that she can now live a relatively healthy life And she s doing her part to give back to the bleeding disorders community through her profession I feel like I can use my personal experience in understanding patients and where they re coming from she says I ve found the spot where I m supposed to be Researchers clinicians and advocates will continue to work so that others with factor VII deficiency can find a similar peace of mind Rare Registries When seeking to understand rare bleeding disorders those affecting relatively small numbers of people scattered throughout the world the first goal is simple We have to get our hands around how many patients there are and what problems they experience says Amy Shapiro MD medical director of the Indiana Hemophilia Thrombosis Center in Indianapolis Shapiro takes part in the National Hemophilia Foundation s Medical and Scientific Advisory Council s MASAC s efforts to centralize and enhance resources for rare bleeding disorders As part of those efforts Shapiro and Donna DiMichele MD co chair the Rare Bleeding and Clotting Disorder

    Original URL path: http://www.hemaware.org/story/factor-vii-deficiency (2016-02-18)
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