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  • "The Unfamiliar Bleed" Letter to the Editor | HemAware
    to be severe This in itself may not seem such a big deal but the topic of inherent severity is frequently discussed with new families in clinic We want them to have the correct information I appreciate your attention and time and hope you are able to give a correction in your next edition Sincerely Laurel J Pennick LCSW Arizona Hemophilia and Thrombosis Treatment Center Tucson Editor s reply Thank you for your letter and pointing out the rarity of this case We spoke with Andrew s mom Alicia Morado who explained that her two sons with hemophilia do have different severity levels Alicia recognizes the near impossibility of this and says her sons have been tested twice Andrew has less than 1 clotting ability placing him in the severe category while Tony has 7 to 14 placing him in the mild category Each boy displays the characteristics of his respective level Andrew gets many bleeds and needs prophylaxis treatment Tony bleeds infrequently The Morados hemophilia treatment center HTC staff has mentioned to the family how unusual this is The boys hematologist also verified this with HemAware by e mail As you pointed out the degree of severity of hemophilia is inherited and is the same in the vast majority of families We should have made it clear in the article that the Morados difference in severity levels was not the norm Thank you for calling this to our attention Melanie Padgett Powers HemAware managing editor 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

    Original URL path: http://www.hemaware.org/story/unfamiliar-bleed-letter-editor (2016-02-18)
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  • Russian Fights for Hemophilia Care | HemAware
    RHS and is its current president As a child in Russia with severe hemophilia A Zhulyov spent most of his time at home unable to participate in sports or attend school studying at home instead His experiences early in life encouraged him to fight for better care for others with bleeding disorders in his country For more than two decades Zhulyov has volunteered his time to the cause In 2005 Zhulyov led RHS through an intensive lobbying campaign in Parliament The group was successful in adding hemophilia to a list of disorders that would receive federal money for treatment Now a national hemophilia public registry recognizes 7 629 people with hemophilia and other bleeding disorders in Russia Before the campaign in all of Russia there were approximately 30 million units of factor VIII Zhulyov says Today we have 600 million units Before only in our dreams did we think about home treatment and prophylaxis treatment Now all people who need it receive it Zhulyov continues to work diligently to increase awareness and quality of care in Russia He helped to establish 63 regional chapters In the beginning people understood that we were fighting for our lives he says Now that we have some established programs people are relaxing But if we stop our negotiation with authorities or our support for patients and physicians very soon it will not be progress but regress Treatment for All Access to treatment is one of the biggest challenges facing the majority of people with hemophilia throughout the world Approximately 75 of those living with hemophilia have inadequate care or lack access to treatment WFH s vision is that one day treatment for all people with bleeding disorders will be available Learn More Visit wfh org whd to read more inspiring stories from people around

    Original URL path: http://www.hemaware.org/story/russia-love (2016-02-18)
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  • Calisthenics Benefit the Body | HemAware
    primarily your chest muscles and your triceps using nothing but gravity and your own weight Pushups also work your core muscles such as your abs and glutes And because they can be done in several ways pushups can be tailored to just about anyone s abilities and limitations Some people with elbow and shoulder problems may not be able to tolerate the full body weight of pushups Instead they can do standing pushups against a wall or on their knees Baumann says Adapt the Exercise for You Johnson has come up with a way to make pushups work for him His left elbow doesn t straighten completely and he has trouble bending his right wrist Doing them on my knuckles instead of with my palms down really helps he says For people whose joints don t permit them to do any actual pushing up just holding the pushup or plank position without moving strengthens core muscles and helps develop stability Baumann says This kind of exercise in which a static position is held is called isometric Like pushups most calisthenics can be tweaked to accommodate any limitations We teach patients how to adapt to each of their target joints Bailey says We get creative Having a good teacher is crucial As with any exercise if calisthenics are not done right the risk of injury skyrockets Bailey and Baumann start their patients off slowly giving them time to adapt to the unfamiliar movements and making sure their form is correct For squats for example Bailey has her patients start by doing them against a wall which they can use for support Press the small of your back into the wall and place your feet about 1 to 1½ feet away from it Then slide down to a sitting position and back up again As you build strength and increase the number of repetitions you can hold the squat for several seconds Each repetition is held until muscle fatigue Bailey says In other words until the muscles are shaking and feel like they are about to give out The next step is to move into an open area where the squats not only work your muscles but also develop your balance Another excellent exercise for the lower body is the lunge which promotes stability flexibility and strengthening of your quadriceps glutes and adductors Stand with your back straight and take a big step forward bending your front knee about 90 degrees Keep your weight on your back toes as you drop your back knee so your lower leg is parallel with the floor Hold the position long enough to stabilize yourself Baumann starts her patients off doing five to 10 lunges on each side Use your body s response as a gauge If you cannot fully complete the last few reps with good form you should stop she says If you can tolerate it you can do lunges forward and backward either walking forward or backward with each step as a lunge

    Original URL path: http://www.hemaware.org/story/back-basics (2016-02-18)
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  • Administrative Director Strengthens Region IX HTCs | HemAware
    I asked the late Renée Paper RN founder of the Hemophilia Foundation of Nevada to help She educated the Guam families and clinicians about starting a local hemophilia association and about the concepts of comprehensive care Next I brought clinicians from California and Hawaii HTCs to model a clinic Later I brought Nevada HTC nurse Becky Berkowitz RN to train the clinicians on how to conduct the UDC study To strengthen HTC funding I developed seminars to help HTCs understand the potential benefits of starting outpatient pharmacies that can buy drugs at a discounted rate through the federal 340B program Between 2003 and 2010 nine more of Region IX s centers started 340B pharmacies How is the money generated by the 340B program used It s required that 340B income be used to reach more patients or provide more comprehensive services so it helps pay for the salaries of existing and new staff which we need as the bleeding disorders community grows It also pays for travel supplies and other costs for outreach clinics and educational programs Is the HTC network under threat from proposed cuts in government spending There are many threats that can compromise patient care Some insurers now require a 30 co pay This can impoverish families and push them onto state insurance programs But state programs are already cutting back reimbursement which reduces access to HTCs Education is such a large part of the lifelong preventive and treatment aspects of bleeding disorders HTC clinicians spend extensive time with patients and families making sure they are treating their disorder appropriately at home and know when to call the HTC for dangerous bleeds However insurance doesn t cover the cost of that education This past February Mary Wakefield PhD RN administrator of the Health Resources and Services Administration

    Original URL path: http://www.hemaware.org/story/western-medicine (2016-02-18)
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  • Actively Aging | HemAware
    t usual for you Blood in the urine or stool may occur occasionally in men with hemophilia but bleeding also can be the first sign of an age related malignancy such as colon cancer Remember that many conditions are more easily treated if they are identified earlier so don t delay telling your PCP and HTC about new bleeding Undergo age related tests Sometimes routine screening tests for age related conditions such as a colonoscopy or diagnostic procedures such as a prostate biopsy are thought to be too risky for men with bleeding disorders These tests might be delayed or not performed Aging men with hemophilia should undergo screening and diagnostic procedures as recommended for men without a bleeding disorder It s also important to insist that your HTC be contacted and that it supplies a regimen for factor replacement and any other treatments to minimize the risk of bleeding Steps for Living Treatment Basics Inform your HTC of new diagnoses or medicines Finally treatment of certain conditions that are more common in older men may require medications that can increase the risk of bleeding Involving your hematologist in these discussions is essential so make sure your HTC is aware of any new diagnoses or medications With a good primary physician attentiveness to unusual bleeding and involvement of your hematologist in managing age related medical conditions you ll meet the challenges and joys of growing older head on Patrick F Fogarty MD is director of the Penn Comprehensive Hemophilia and Thrombosis Program at the University of Pennsylvania Medical Center in Philadelphia 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

    Original URL path: http://www.hemaware.org/story/actively-aging (2016-02-18)
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  • Washington Days 2011 | HemAware
    hemophilia treatment center HTC funding Don t be afraid to get in front of your member and tell your story Altmire said You all have great stories to tell You are making a big difference by being here That send off set the tone for the day as individuals and families from Maine to Washington state met with their senators and representatives to hammer home two main issues for the bleeding disorders community this year They urged legislators to maintain not cut funding for HTCs and not to repeal the healthcare reform bill The bill eliminated annual and lifetime limits on insurance policies as well as exclusions for pre existing conditions NHF s two asks were well received among some seasoned and freshman legislators alike Paul Ryan R WI a fiscal conservative and chair of the House Budget Committee listened to his constituents with bleeding disorders Where we re making cuts is in those agencies with massive increases he said Ryan was impressed that federal funding for HTCs had not changed in a decade Flat funding flies under the radar screen he assured the group As Washington Days attendees headed back to the hotel after a full day on the Hill their advocacy efforts were not over A state training session on Friday by NHF s advocacy team reminded members of the bleeding disorders community to take their stories to their state capitols around the country Personal stories are persuasive and powerful 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

    Original URL path: http://www.hemaware.org/story/washington-days-2011 (2016-02-18)
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  • WFH Program to Strengthen Global Research | HemAware
    practice says Alison Street MD WFH vice president medical Research can also help improve our understanding of the minimum and maximum dosage and duration of treatment in both on demand care and prophylaxis Research is key to understanding and managing inhibitor formation and developing treatments for rare factor deficiencies too The creation of new products can improve supply making treatment available to the 75 of people with bleeding disorders around the world who do not have access Advancing the necessary research to achieve the WFH s vision of treatment for all is a challenge that cannot be met by the efforts of one individual organization company or country Skinner says As patients we play an important role in this research framework Without our collaboration and participation research will not advance Global Research Forum The WFH aims to foster research relevant to the global bleeding disorders community promote multinational research collaboration and mentorship establish strategic partnerships and ensure patient protection and ethical practices As a first step the WFH organized the first Global Research Forum which took place March 22 23 2011 in Montreal Seventy six scientific experts agency regulators patient leaders health professionals ethicists researchers and industry representatives attended to discuss and debate some of the critical research issues These included Patient and clinician involvement issues including recruitment safety and ethics and post trial obligations Clinical trial challenges such as clinically relevant outcomes Agreement on definitions such as whether disease severity should be based on bleeding not factor level The forum identified the most pressing challenges and unmet research needs globally The outcomes will form the basis for the WFH s new research agenda which will be launched at its 2012 International Hemophilia Congress in Paris as part of its 50th anniversary celebration Learn More World Federation of Hemophilia View

    Original URL path: http://www.hemaware.org/story/growth-opportunity (2016-02-18)
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  • Growing Older Proactively | HemAware
    mild and easily disregarded for years The current treatment regimen is rough side effects abound and less than half of patients clear the virus Improvements however are on the horizon There are new drugs coming on the market as early as this year that will increase the response rate and decrease the time of treatment Konkle says Achy Joints Prophylactic treatment in which clotting factor product is infused to prevent bleeds was not routinely prescribed to older men with hemophilia in the US during their youth Consequently arthritic achy joints are common in most men with severe hemophilia over 40 When I was growing up I wanted to be a Major League baseball pitcher That s how I screwed up my right elbow says Larry Maddox 51 of St Paul Minnesota He has stiff ankles and severe arthritis in his knees Maddox uses crutches to get around his apartment and a walker when he s out in public Due to complications from his severe hemophilia A Maddox retired from clerical work 14 years ago He receives Social Security disability benefits through Medicare Bob also has bad joints In my left elbow I have synovium buildup I have very little if any usage of it he says As a lefty that s a problem It creates a lot of pain in the evening he says He takes hydrocodone on the bad days Bob s right knee also bothers him I have a hard time walking down steps I can t walk long distances either Prophylaxis is used in some older patients Secondary prophylaxis where we start factor after someone has established joint disease doesn t reverse it but it may slow the progression Konkle says Still more data are needed she says Older people with impaired leg joints tend to be more sedentary have weaker muscles and are more prone to falls I always worry about falling because I have poor balance largely due to my knees not being able to bend Maddox says In January 2010 he fell twice in his apartment and could not get up Wearing a wireless medical alert device allowed him to summon help The paramedics were out here in a flash so it does work Where there is osteoporosis or bone thinning falls can result in fractures Viruses may also play a role Hepatitis C may be a slight risk factor for increased risk of osteoporosis says Konkle Those who are HIV positive are definitely at risk she says The cause may be the virus and or its treatment See Vitamin D and Hemophilia HTC s Expanding Role Ellen Kachalsky LMSW ACSW and Angela Lambing MSN NP C of the Hemophilia and Thrombosis Treatment Center Henry Ford Health System in Detroit are spreading the word that HTC staff are positioned to meet aging patients multifaceted needs They co authored the 2009 Haemophilia article The New Age of Haemophilia In 2010 Kachalsky co wrote Aging with Hemophilia Implications for Social Work Practice published in Social Work

    Original URL path: http://www.hemaware.org/story/growing-older-proactively (2016-02-18)
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