archive-org.com » ORG » H » HEMAWARE.ORG

Total: 1100

Choose link from "Titles, links and description words view":

Or switch to "Titles and links view".
  • Lifting the Covers on Alternative Pain Remedies
    dismiss these ideas out of hand then the patients are being taught they should not talk with us about such things Lewis says However they still find out about CAM and use the therapies anyway The point is that both parties need to keep open the lines of communication Among the risks in not telling your traditional healthcare provider what CAM treatments you are taking are Individual risks such as other conditions e g liver disease HIV AIDS or food alcohol or other drug interactions Poor data collection systems or monitoring for complementary medicine that may lead to underestimation of bad effects and overestimation of good ones Few quality risk versus benefit analyses for many treatments Pain Pain Go Away A variety of CAM modalities are used to address joint pain in general and arthritis pain in particular Certain herbs and supplements derived from naturally occurring substances in plants are taken by mouth like conventional medications However the US Food and Drug Administration FDA does not regulate herbs and supplements the same way it does food and drug products prescription and over the counter medications Under the Dietary Supplement Health and Education Act of 1994 DSHEA the dietary supplement manufacturer is responsible for ensuring that a dietary supplement is safe before it is marketed according to the agency FDA is responsible for taking action against any unsafe dietary supplement product after it reaches the market Generally manufacturers do not need to register their products with the FDA nor get FDA approval before producing or selling dietary supplements Manufacturers must make sure that product label information is truthful and not misleading As with the pursuit of any treatment decisions about using herbs and supplements should only be made in close consultation with your healthcare team Many products may interfere with clotting and have actions that are similar to blood thinning agents such as aspirin or coumadin For example glucosamine and chrondoitin sulfate used widely for treating the pain of arthritis and omega fatty acid supplements or herbals such as willow bark tea may have aspirinlike effects Alternative treatments are used not just for pain management but also to treat certain conditions Research on the use of the herb milk thistle to treat liver cirrhosis and chronic hepatitis has shown some promising findings However studies have been small according to NCCAM People with bleeding disorders who have a liver condition should contact their provider before using milk thistle or other herbs Some therapies may not directly relieve pain but may offer indirect benefits Meditation is another possible approach to cope with pain caused by bleeds in those with hemophilia There appears to be little or no downside for its use in these patients according to Lewis Studies of other types of chronic pain appear to show positive pain lowering results with the use of disciplines such as meditation and tai chi considered a soft martial art 1 As an exercise program tai chi consists of slow controlled movement and gentle stretching of the joints that aid coordination and stability Steps for Living The Pain Facts Programs using alternative therapies such as tai chi and meditation in combination with traditional medications appear to be beneficial for patients with arthritis the researchers conclude These individuals appear to live better lives and may have better long term outcomes 1 We know that people can change the way they feel their blood pressure energy level and even their sense of what their pain is like with meditation Lewis says Similarly we don t use hypnotherapy anywhere near as often as we should Yoga is another form of exercise that incorporates stretching strengthening and balance It can be useful for people with bleeding disorders but they should make sure that the classes they take are appropriate for people with arthritis or other joint conditions and not too advanced for their fitness level and ability The person has to take into account his or her personal target joint limitations says Sherry Herman Hilker a physical therapist at the University of Michigan Adult Hemophilia and Coagulation Disorders Program in Ann Arbor The forms of exercise that a person with ankle problems should do are probably different from those undertaken by a person with elbow bleeding concerns This is an individualized concern that should be carefully explored in consultations between the patient traditional medicine treatment team and the complementary practitioner Massage therapy also can be useful in lessening pain improving stress relief and inducing relaxation and decreasing muscle spasms Massage has a long track record in helping athletes with joint and muscle problems Lewis cautions that deep tissue massage should be avoided by those with a bleeding disorder because of the possibility of causing a bleed in the muscles However more superficial massage should not be a problem he says In craniosacral therapy CST gentle pressure is applied to the head and spine which is thought to correct imbalances and restore the proper flow of the fluid that surrounds the brain and spinal cord Studies to date have shown little indication of its usefulness but many who use it swear by it When our son was diagnosed with hemophilia one of the things we looked into was CST says April Bennett of Lyndhurst Virginia It has helped with pain fluid reabsorption nerve protection and general trauma recovery Some oils made from herbs and other plant materials are thought to enhance pain relief when used topically in conjunction with massage or when inhaled as part of aromatherapy For example lavender oil has been shown to cut pain medication use in people with arthritis 2 Capsaicin cream made from chili peppers has been shown to alleviate pain in general 3 However it should be stressed that there are no studies showing that either therapy works in those with pain secondary to hemophilia There appear to be no concerns about use of most oils in people with hemophilia especially since most of them are only used on the skin Lewis says He notes

    Original URL path: http://www.hemaware.org/print/411 (2016-02-18)
    Open archived version from archive

  • Is Your Child in Pain?
    is of the essence when it comes to effective bleeding management and long waits at the ER make it more difficult to treat pain efficiently Whenever possible a parent should bring educational material to the ER and encourage the ER doctor to contact the HTC Acute bleeds are painful If your child is having one he will likely modify his physical activity You may notice an infant crawling differently or a toddler walking with a slight limp or turning his foot to the inside or outside A child who typically plays or writes with his right hand will use his left hand instead Preschoolers often like to play while squatting or will squat to pick up objects you may notice that your child is now bending at the waist to pick up objects or sitting to play He may hold the affected area very still for example swinging only one arm naturally when walking while the other arm lies still at his side Often these subtle signs can be observed prior to any outright signs of a bleed Watch for Signs of a Bleed A joint or muscle bleed is typically red warm swollen and painful to bend or flex Your child may complain of tingling burning or pain in a specific area There may be pain when pressure is applied Ask your HTC for literature on specific types of bleeds and recommendations for handling them Become familiar with types and locations of bleeding episodes especially those that are potentially life threatening Seek medical attention as advised by your center The day may come when you doubt that the bleed your child tells you about is real This does not necessarily mean the child is lying he just might not be able to identify the bleed correctly This is normal It is important to believe your child when he says he is having a bleed however be aware of patterns that may develop such as a child who always seems to have a bleed on the day he has an exam at school Or you may notice that your younger child reports that he is having a bleed just before the babysitter arrives for the evening or prior to your weekend getaway Over the years we have had several families call the center distraught because their child seems to have a recurring bleed at the same time on a weekly basis These families report that their child is complaining of pain but they don t see any visible signs of a bleed With further questioning we often are able to determine the issue Sometimes it is as simple as a child who wants to stay home and play video games instead of going to school And sometimes it occurs when there is a new baby in the home and the child is looking for extra attention Recognizing and gently addressing these patterns early is important The HTC medical staff and social worker can assist you It is crucial to maintain

    Original URL path: http://www.hemaware.org/print/176 (2016-02-18)
    Open archived version from archive

  • Metal Allergies and Surgery
    at the University of Colorado Denver at the American Academy of Orthopaedic Surgeons 2014 Meeting in March in New Orleans In the study 23 patients with previous metal allergies were given a pre op skin patch In all 74 tested positive for sensitivity to metal Testing was also performed on 83 patients with unexplained stiffness and pain post op More than half 53 also tested positive for metal allergies Patients

    Original URL path: http://www.hemaware.org/print/1170 (2016-02-18)
    Open archived version from archive

  • Send page by email | HemAware
    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 Infants

    Original URL path: http://www.hemaware.org/printmail/602 (2016-02-18)
    Open archived version from archive

  • Hypnosis for Pain Management
    takes it down a notch or two but that s still uncomfortable Add hypnosis to the mix and it could reduce your pain even further making it bearable More and more healthcare professionals appreciate the need to attack pain from different directions These patients are in significant pain and we recognize you need multimodal therapy more than one way to approach it says Angela Lambing MSN NP C nurse practitioner coordinator at the Henry Ford Health System Hemophilia Thrombosis Treatment Center in Detroit Alternatives to pain medication can be attractive to those whose bodies have built a tolerance to painkillers or who are concerned about becoming dependent on opiates such as morphine or oxycontin Opiates affect people in different ways and not everyone develops a tolerance Lambing says With a patient on opiates there needs to be excellent communication between the patient and providers ongoing contact and monitoring and significant patient education she says Bobby Tran MD 28 uses self hypnosis when he feels joint pain beginning He has severe hemophilia A with a history of an inhibitor that resolved after immune tolerance therapy Tran s target joints are both ankles and his left elbow I use hypnosis as an adjunct to hold out on pain meds he says Before learning self hypnosis Tran who recently completed his residency in internal medicine at the University of South Florida in Tampa often relied on Tylenol Celebrex and RICE rest ice compression and elevation With hypnosis I ve found that I ve actually been able to use less pain medication whenever those acute flares do occur Steps for Living Treatment Basics Becoming Hypnotized Before anyone tries hypnosis he should be taught the process by a medical professional trained in the technique During a session the medical provider acts as a guide offering suggestions to the patient who is in control and cannot be forced to do something he does not want to do It is important to note that hypnosis is not for everyone and works differently for each person The first step is the induction the period that helps the participant relax The guide may ask the participant to center on breathing gradually slowing it down or focus inward on the way his body s organs and systems are functioning In the deepening stage the person becomes more relaxed until he reaches a state of hypnosis Next the participant will be asked to visualize One technique is to imagine a pain dial in the brain that the person will know how to turn down Another technique is what Walker uses going to his favorite place and allowing his pain to float away in a balloon Walker used self hypnosis in 2009 after surgery that fused both his ankles His body has become so tolerant to pain medications that hospital staff had a hard time finding something to prevent pain after his surgery The pain team had done nerve blocks in my knees and given me all the painkillers they d dared

    Original URL path: http://www.hemaware.org/print/602 (2016-02-18)
    Open archived version from archive

  • Banding Together for Hemophilia Research
    purposeful it directly supports NHF and its research fellows it is also practical We all benefit when we support research that will hopefully give us new insights into the factor VIII gene and the factor IX gene Dominic says All of those things contribute to the future and well being of people with bleeding disorders Making research a priority was even further solidified in 2005 2006 when HOG s board of directors became a governance board The board chose as one of its ends that we would identify research projects that would hopefully make a difference in the care and treatment of people with bleeding disorders says Dominic For other chapters considering initiating or expanding their support for research leaders must be invested Dominic says Your leaders have to understand and value research That becomes a direction and a focus Once a chapter dedicates funds to research such as the JGP Fellowship it can take pride in being a part of something bigger than itself Whatever we gain is important says Dominic The Parent By June 8 this year Erin and Dino Cirelli of East Hanover New Jersey were busy with prep work and donation requests for the Walk for Hemophilia that took place in their town on June 9 By June 10 the day after their local hemophilia walk the Cirellis already knew they d do it again and they ll keep doing it until a cure is found for their son Nicholas severe hemophilia A and others like him Photo courtesy of the Cirelli family The Cirelli family celebrated the fifth year of the Walk for Hemophilia in East Hanover New Jersey in 2013 This year s event raised 56 404 for hemophilia research For Erin Cirelli an attorney the focus is always on a future where children with hemophilia don t have to sit still for needle pokes and infusions because there s a better way Before I m dead I want there to be a cure for hemophilia or at a minimum a better treatment something longer lasting says Erin 42 We re shooting for the stars here Erin has not only walked in her hometown s Walk for Hemophilia every year for the past five years but she and her husband also helped found it The couple organizes all the donations that keep the walk going from the food to drinks to T shirts They also organize the individual teams In the past four years they ve raised about 150 000 for research This year they raised 56 404 Through a special arrangement with NHF every penny of the New Jersey walk goes to the Nicholas Cirelli Family Research Fund NHF Judith Graham Pool Research Fellowship The fellowship was established in 2013 In contrast money raised by walks typically goes to chapters which then decide how to use it The Cirellis didn t name the fellowship after their son for recognition They did it so that one day Nicholas can look back and say My

    Original URL path: http://www.hemaware.org/print/1020 (2016-02-18)
    Open archived version from archive

  • Genotyping for Progress
    a Long Unmet Need Despite the benefits of genotyping a survey of healthcare providers conducted by ATHN in October 2012 shows that only 20 of people with hemophilia in the US have been genotyped The majority of respondents cited the cost of testing and insurance coverage restrictions as the main barriers But the community s interest in genotyping is high In a 2012 survey of more than 1 000 hemophilia community members conducted by NHF more than 75 said they would take advantage of free or low cost genotyping if it were available My Life Our Future addresses this obstacle and will eventually enable most people with hemophilia in the US to be genotyped at no or very low cost For the past 15 years we in the hemophilia community have been advocating for widespread access to genotyping for patients and carriers but until now the combination of resources and expertise was not available says Glenn Pierce MD PhD senior vice president global medical affairs for Biogen Idec and chief medical officer of Biogen Idec Hemophilia As a two time past president of NHF s board of directors Pierce remembers when NHF s Medical and Scientific Advisory Council MASAC passed a resolution in 1999 recommending genotyping as part of comprehensive care for individuals with inherited bleeding disorders MASAC also recommended that NHF identify funding sources to make the service widely available In 2003 a resolution was introduced in Congress to increase funding for research for bleeding disorders and facilitate genotyping but it was not enacted In 2005 the Centers for Disease Control and Prevention provided access to genotyping to a subset of patients as part of a study of inhibitors but was unable to offer a national genotyping program due to logistical and funding challenges My Life Our Future has been made possible through the collaboration of four leaders in the hemophilia community each of which plays a crucial role in the program ATHN a not for profit organization representing more than 130 hemophilia treatment centers HTCs is ensuring the collection and secure storage of data and preparing HTCs to implement the service NHF is educating patients and the community about the program through its chapter network and resources PSBC a state of the art laboratory and research institution with expertise in hemophilia mutation analysis is conducting the secure genetic testing and analysis Biogen Idec Hemophilia a biotechnology company committed to empowering people with hemophilia is providing funding and scientific expertise for the partnership through at least 2014 Thereafter the project may be extended to provide greater access to those affected by hemophilia In November 2012 MASAC adopted a recommendation that all individuals with hemophilia and their affected family members participate in My Life Our Future My Life Our Future How It Works The goal of My Life Our Future is to genotype as many people in the US affected by hemophilia as possible To ensure a smooth national rollout the program is being piloted in spring 2013 in at

    Original URL path: http://www.hemaware.org/print/982 (2016-02-18)
    Open archived version from archive

  • Genotyping for Progress | HemAware
    increase funding for research for bleeding disorders and facilitate genotyping but it was not enacted In 2005 the Centers for Disease Control and Prevention provided access to genotyping to a subset of patients as part of a study of inhibitors but was unable to offer a national genotyping program due to logistical and funding challenges My Life Our Future has been made possible through the collaboration of four leaders in the hemophilia community each of which plays a crucial role in the program ATHN a not for profit organization representing more than 130 hemophilia treatment centers HTCs is ensuring the collection and secure storage of data and preparing HTCs to implement the service NHF is educating patients and the community about the program through its chapter network and resources PSBC a state of the art laboratory and research institution with expertise in hemophilia mutation analysis is conducting the secure genetic testing and analysis Biogen Idec Hemophilia a biotechnology company committed to empowering people with hemophilia is providing funding and scientific expertise for the partnership through at least 2014 Thereafter the project may be extended to provide greater access to those affected by hemophilia In November 2012 MASAC adopted a recommendation that all individuals with hemophilia and their affected family members participate in My Life Our Future My Life Our Future How It Works The goal of My Life Our Future is to genotype as many people in the US affected by hemophilia as possible To ensure a smooth national rollout the program is being piloted in spring 2013 in at least 10 HTCs that will offer free or very low cost genotyping to existing patients Once the results from the pilot sites have been reviewed and any needed adjustments made the genotyping service will be expanded to other HTCs across the country Plans are to eventually expand the service to potential carriers Science Photo Library Glow Images During the pilot phase and after individuals with hemophilia A or B who want to access the genotyping service will only need to visit their participating HTC for a blood test The HTC will send the blood sample to PSBC s specialized hemophilia laboratory for genetic analysis PSBC will then send a clinical report summarizing the test results to the HTC where the test was done The patient s treating physician will then share the screening test results privately with his or her patient This report will be stored in the individual s HTC record and in PSBC s secure laboratory information system The clinical report will not be shared with insurers employers or other parties It will be up to patients whether they want to share the report with others including family members The program will adhere to best practices and all state and federal laws designed to protect the privacy of patients including the Health Insurance Portability and Accountability Act HIPAA and the 2008 Genetic Information Nondiscrimination Act GINA Furthering Scientific Research for Future Generations In addition to receiving results that

    Original URL path: http://www.hemaware.org/story/genotyping-progress?quicktabs_story_page_tabs=1 (2016-02-18)
    Open archived version from archive



  •