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".
  • Be Active and Stay Hydrated | HemAware
    use from the ACSM Expelling a large amount of light colored urine means you re hydrated Dark urine indicates dehydration Sports beverages provide carbohydrates and electrolytes such as potassium The longer the activity you engage in the more you need a sports beverage Weigh yourself before and after you exercise to see how much fluid you lose through activity A 1 or greater weight loss signals dehydration If you have von Willebrand disease VWD check with your hematologist about hydration The VWD medication DDAVP can cause fluid retention and hyponatremia an excessively low concentration of sodium in the blood Source acsm org 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 Taming the Fast Food Tiger 2 Chronic Fatigue Can Harm Your Health 3 Swapping Your Stinky Shoes 4 Distracted Driving Dangers 5

    Original URL path: http://www.hemaware.org/story/be-active-and-stay-hydrated?quicktabs_story_page_tabs=0 (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/429 (2016-02-18)
    Open archived version from archive

  • Building Strength Through Functional Fitness
    reduces strain but also makes the job easier Other examples of functional fitness are squatting and lifting Most people do them several times a day when they do the laundry carry shopping bags or clean up after their kids The exercise involves bending at the knees until in a near sitting position while holding a small dumbbell and then standing up straight Practicing the proper form will help you avoid injuries during your daily routine Functional fitness developed as an aid to rehabilitation for patients recovering from an injury or surgery During the past several years though it has become more popular In fact the American College of Sports Medicine ACSM ranked functional fitness among the top 10 in three of its past four annual fitness trend surveys In 2009 it was number 11 The first thing Bailey focuses on with new patients is developing their core muscles which include abdominals lower back hips and pelvis The goal is to build not only strength but balance and stability as well A well anchored center gives us better control over all our muscles and joints says Bailey And better control means fewer bleeds Using an exercise ball or Swiss ball helps develop strength and balance Pilates says Bailey is another excellent way to build up your core She also recommends rowing machines upright stationary bicycles not recumbent bikes and elastic resistance bands Bailey and physical therapist Stacie Akins PT are both strong supporters of swimming If you have access to a pool use it says Akins of the Indiana Hemophilia Thrombosis Center in Indianapolis It s a whole body workout without stress Akins also recommends one of the most basic examples of functional fitness walking Most people walk every day and it s a great way to build cardio fitness and

    Original URL path: http://www.hemaware.org/print/429 (2016-02-18)
    Open archived version from archive

  • Functional Fitness | HemAware
    the job easier Other examples of functional fitness are squatting and lifting Most people do them several times a day when they do the laundry carry shopping bags or clean up after their kids The exercise involves bending at the knees until in a near sitting position while holding a small dumbbell and then standing up straight Practicing the proper form will help you avoid injuries during your daily routine Functional fitness developed as an aid to rehabilitation for patients recovering from an injury or surgery During the past several years though it has become more popular In fact the American College of Sports Medicine ACSM ranked functional fitness among the top 10 in three of its past four annual fitness trend surveys In 2009 it was number 11 The first thing Bailey focuses on with new patients is developing their core muscles which include abdominals lower back hips and pelvis The goal is to build not only strength but balance and stability as well A well anchored center gives us better control over all our muscles and joints says Bailey And better control means fewer bleeds Using an exercise ball or Swiss ball helps develop strength and balance Pilates says Bailey is another excellent way to build up your core She also recommends rowing machines upright stationary bicycles not recumbent bikes and elastic resistance bands Bailey and physical therapist Stacie Akins PT are both strong supporters of swimming If you have access to a pool use it says Akins of the Indiana Hemophilia Thrombosis Center in Indianapolis It s a whole body workout without stress Akins also recommends one of the most basic examples of functional fitness walking Most people walk every day and it s a great way to build cardio fitness and burn calories she says But Akins also recognizes that not everyone can walk comfortably For someone with severe arthropathy walking from the car to the store can feel like walking a mile she says She stresses that any exercise regimen has to be individually tailored to a person s needs and abilities Before starting patients on any new exercise I want to see where their baseline is what they can and cannot do what joints are giving them problems Then I start them on a low key program Whatever that program involves a pool an elliptical trainer a good pair of walking shoes the secret is to keep at it Physical activity protects your joints Akins says Get up and move That s a lesson that Patrick Tomlinson 22 has learned well An advocate of functional fitness he gets most of his exercise on a bicycle See Road Trip HemAware September October 2008 p 80 Tomlinson prefers to ride outdoors but when the weather in his hometown of Marysville Michigan is not cooperating he rides a stationary bike at home Tomlinson who has moderate hemophilia A also spends time at the gym I don t go to the gym to get gigantic Tomlinson says I

    Original URL path: http://www.hemaware.org/story/fitness-everyday-life?quicktabs_story_page_tabs=0 (2016-02-18)
    Open archived version from archive

  • 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/756 (2016-02-18)
    Open archived version from archive

  • Back to School With a Bleeding Disorder
    teacher school nurse and a representative of the administration Some private schools and school districts are cutting back on school nurses so not all schools have a nurse or the nurse may only be available on a limited number of days You might also invite the child s teacher from a previous year suggests Shelley Gerson immediate past president of the Hemophilia Foundation of Michigan and a former teacher counselor and camp director Steps for Living Physical Education Sports Teams and Recess It can be really beneficial and reassuring for teachers to hear from other teachers who have had experience with your child Gerson says Middle school or high school children should be encouraged to attend the meeting and speak about their bleeding disorder Robinson suggests that even young children be present at the beginning of the meeting perhaps to hand out written information or come in at the end to meet the school staff If the child is not present simply showing some pictures to the group can break the ice and help everyone relax she adds At the meeting distribute brochures or information sheets that explain the basics of bleeding disorders how to recognize a bleed emergency contact numbers and how to handle various situations that may arise For example make sure the staff know that an injury to the head neck or abdomen constitutes a real emergency and that they should call 911 right away School staff also should know the severity of your child s bleeding disorder special precautions that need to be taken if he or she has an implanted port or an inhibitor whether your child is on prophylaxis what medications to avoid and the sports and physical activities in which he or she can safely participate This is a good time for parents to share with school staff the family s emergency and or disaster plan for their household At the same time they can obtain information from the school about its evacuation or other contingency plans if something were to happen on school grounds or nearby Parents can ask What is your plan to get together with your child What does the school do Give staff several contact numbers of relatives friends or other guardians who are authorized to pick up your child if you cannot be there Work with the nurse and teachers to draft a written individualized healthcare plan IHP for your child See Laws That Protect Your Child Arrange to share this information with anyone else who will have regular contact with your child such as a bus driver lunchroom or recess aide and coach or other extracurricular activity supervisor Steps for Living Field Trips Extracurricular Activities Robinson cautions parents not to assume that the healthcare plan information will be kept on file from year to year It s a good idea to touch base with the school at the beginning of each year because school personnel change and so does your child Throughout a child s school years

    Original URL path: http://www.hemaware.org/print/756 (2016-02-18)
    Open archived version from archive

  • Selecting a Day Care | HemAware
    well as that of your child s physician Also include your child s health history what type of bleeding disorder he or she has blood type and treatment An emergency plan can be worked into an IHP outlining specific procedures for bleeding episodes and stating who should treat your child It s important to have these conversations and see what their willingness is to understand hemophilia says Leslie McGeady MSW LISW of the Dayton Children s Medical Center in Ohio If you get the sense that your child is not different not important then that should be a red flag Private centers and caregivers can refuse to take in a child with hemophilia That s why it s important for parents to know their Americans with Disabilities Act ADA rights says McGeady She also suggests that parents become familiar with the requirements of laws for state day care centers such as the ratio of children to staff how staff is trained and whether they have emergency medical training and the protocol for handling an emergency While public schools and day care centers have to abide by the federal ADA stipulations and state laws private centers might not be as accommodating For example private day care centers might have different mandates for responding to an emergency and might not call parents immediately if a child has a bleed In these situations it s the responsibility of the parent to inform their child s caretaker how to react Don t expect the day care center to know explains Merritt You might be the one to educate Parents should also read research and talk to others in their community to learn their options All parents need to empower themselves and do their research Merritt says Steps for Living Sample Letter for Day Care Preschool pdf Selecting a Provider Once you have narrowed your search it s important to visit each place and personally interview the people who will be caring for your child Leave enough time to walk around and observe the interactions between kids and providers says Merritt Go in and observe suggests Merritt See what the dynamics are like and if they are supervising the children well Get to know the staff and ask them what they know about bleeding disorders about caring for a child with one and how many kids they are caring for now In general Merritt advises that the ratio of children to teachers be 3 to 1 in day care and about 4 6 to 1 in preschool If it s not that ratio then keep shopping she says McGeady advises parents and family to look around and check the physical environment of the day care facility asking themselves Are wall outlets covered Have they passed all of their state inspections Are they licensed Is it secure What is your general comfort level By visiting regularly with the school or day care provider and by simply being aware of your child s new surroundings you will

    Original URL path: http://www.hemaware.org/story/selecting-day-care (2016-02-18)
    Open archived version from archive

  • Back to School With Hemophilia | HemAware
    child feels safe and comfortable at school That means parents should expect to be on call to check out or treat symptoms of a bleed or simply to allay the fears of school staff We tell them if you re in doubt just call us and we ll make the decision Luckey says Particularly in the younger grades we d get a lot of calls from the teacher in the first month of school but it lessened as they got used to him I like it if they the school staff are a little scared says April Baird of Clinton South Carolina whose son Clayton 12 has severe hemophilia I don t care if they call me every day It is up to parents to guard against too little or too much caution on the part of schools We had an incident in fourth grade where he got hurt and asked if he could go to the health room Baird says The teacher wouldn t let him and by the time he got home he had a big knot on his head I told him in the future he should just get up and go anyway I knew they d be calling me and I could deal with the situation then On the other hand Baird says Last year we had a nurse who called all the time and when I got to school she d tell me she d feel more comfortable if I d just take him home Then I d have to get more aggressive and let her know that I ve checked it out he s had a shot and there s nothing more that can be done so he needs to stay in school When Tammy McFadden of Rock Hill South Carolina went to visit the preschool her son Dentavious now 11 would attend she discovered that a staff member had already been assigned to stay with him on the playground I had to let them know that he s a normal kid and I didn t want him singled out she says When I explained what they needed to look for they scaled back a bit Know Your Rights When dealing with schools it s important to know that the law is on your side Schools are required to make necessary accommodations to provide every child with a proper education in the least restrictive environment See Laws That Protect Your Child for an explanation of the different laws and written health plans that might apply to your child While some schools may balk at allowing older kids or parents to infuse factor during school hours because of the risk of exposure to needles and medical waste you do have the right to do so If you have problems convincing the school staff to allow your child to infuse you may have to request a hearing Your child s hematologist and HTC nurse may need to intervene You also may need to reassure the school that the child has been trained in self infusion Steps for Living Teaching Kids About Self Infusion We always encourage parents to keep a dose of factor at school stressing that we don t expect the school nurse to administer it but so that a parent doesn t have to go home to get it or that if a child is self infusing he can do it there without having to miss class says White the hemophilia nurse from Children s Hospital of New Jersey at Newark Beth Israel Medical Center Make sure the school has a refrigerator to store the factor and also discuss where staff will store the syringes Another important safeguard is the right to privacy Ask teachers not to discuss your child s health or health needs casually anywhere at school It also is up to you and your child not the school to decide whether and how to tell classmates about the bleeding disorder Often older kids prefer that their peers not know while younger children may be less inhibited In short when dealing with your child s school Robinson says It is really important that parents come across as team players that they express appreciation to the school and make it clear that they re there to support their child and the teachers so their child can have the most normal school experience possible A parent s motto should be advocate and educate Steps for Living Learn how to advocate for your child Learn More Steps for Living Field Trips Extracurricular Activities Steps for Living Learn how to advocate for your child Contact NHF s Information Resource Center at 800 42 HANDI for these brochures and fact sheets on how to prepare your child for school The Child with a Bleeding Disorder First Aid for School Personnel Playing It Safe Bleeding Disorders Sports and Exercise Also check out two PowerPoint presentations on school issues on NHF s Web site For more information on how to become an advocate for your child visit The Center for Health and Health Care in Schools American School Health Association Parent Advocacy Coalition for Educational Rights National Dissemination Center for Children with Disabilities The Families and Advocates Partnership for Education US Department of Education National Association of School Nurses Laws That Protect Your Child Your child s right to an education is protected under two important federal laws How they are used or deemed necessary can vary by state and school district In addition these laws are not always applicable in private school preschool or daycare settings You should be able to obtain clarification about what is required by your child s school from your state education department local school district or school board Section 504 of the Rehabilitation Act of 1973 Public Law 93 112 ensures equal access to an education for a child with a disability that requires some accommodation whether that disability is visible or hidden The law specifies that anyone with a physical or mental

    Original URL path: http://www.hemaware.org/story/back-school-bleeding-disorder?quicktabs_story_page_tabs=0 (2016-02-18)
    Open archived version from archive



  •