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  • Career Decisions for Teens with Bleeding Disorders | HemAware
    doing a part time internship during the school year can help you see what a particular job entails Find a mentor If there is an older person with a bleeding disorder whose work related achievements you admire ask if he will mentor you Building a relationship with someone who has a life that you respect can help make a big difference in moving toward your own decisions and eventual independence says Henningfeld Steps for Living Building Independence Considering the Physical Demands Though Kucab loves his job as a critical care nurse he sometimes wonders how long he can keep going I bend down a lot in my job and for a while it was taking a toll on my knees he admits I know that long term it s not the best fit for me He sees his job as a stepping stone to a less physically demanding nursing position down the road That flexibility was one of the reasons he chose to become a nurse Miller feels lucky that her career choice meshed with her physical needs One of the things that attracted me to customer service was that it s not hard on the joints Miller says But it s not always easy to find a career that s compatible with a bleeding disorder In fact young people s dreams of a career can be unrealistic We ve seen quite a disconnect in what they want to do and what s feasible says Gail Day LCSW a social work supervisor with Hemophilia of Georgia I ve talked to boys with severe hemophilia who want to become football players or do some other very physically demanding job To steer young men in a more realistic direction Day teams up with the nurses at her center to discuss the medical implications of a particular career choice such as the strain it can put on joints If you re set on working in a physically demanding job Veronesi advises thinking creatively Instead of stocking shelves at a home improvement store for instance see if you can drive the vehicles that carry the merchandise Know where a job can take you five or 10 years down the road says Henningfeld For example if you want to build homes find out which job would best position you to grow into a supervisory role Steps for Living Jobs Careers Insuring Your Future It s a simple but unavoidable fact Your career choice will determine your ability to get health insurance I can t express how important health insurance is says Henningfeld I always tell teens You can pursue any dream you have but consider your healthcare situation first If you re under age 19 you ll still be covered under your parents plan In fact most plans cover dependent children if they re going to school full time until they reach the age of 25 But many young people wonder what comes next See Health Insurance for Young Adults David Linney the hemophilia financial

    Original URL path: http://www.hemaware.org/story/career-decisions-teens-bleeding-disorders (2016-02-18)
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  • Value of Video Games
    gamers excel at many tasks In this new study we show they excel because they are better learners said Daphne Bavelier a research professor in brain and cognitive sciences at the University of Rochester in a prepared statement And they become better learners by playing the fast paced action games The researchers found that gamers outperformed nongamers on a number of tasks That s because video games help our brains

    Original URL path: http://www.hemaware.org/print/1291 (2016-02-18)
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  • Off to College with a Bleeding Disorder | HemAware
    HTC near your school may be willing to find out whether there is another student with a bleeding disorder on campus who might want to meet you Your home HTC can and should continue to be a resource if you have questions Many HTCs recommend keeping the home based HTC as your primary treatment center while you re in college and before transferring to an adult center when you graduate We see students over Christmas break spring break and in the summer before they go off to college enough times that we feel we can still supervise their care says Maiale Howell On campus an office of disability services may be able to help you make up a test you missed for health reasons arrange to take a class online if you have mobility issues or schedule a lighter course load Keep in mind though that many insurance companies require you to maintain full time status in order to continue coverage Telling Your Friends It can be difficult to share information about your bleeding disorder with people you ve just met especially if you are private by nature But keeping your condition a secret can be a burden or lead to serious misunderstandings Infusing could be mistaken for illegal drug use In my experience once you share something so important in your life it s a big load off your shoulders says Ell Miller agrees She says If I am light hearted about it and approach it in the right way people will react in the same way and it s not a big deal Enjoy Yourself Make the most of your college years Get involved with campus life Sign up for clubs and sports you can safely play Such activities are great stress relievers say students and help take your mind off your chronic medical condition LA native Scott sums it up well Prepare yourself ahead of time and most of all don t be afraid Offer Encouragement Get on board in the early school years advises Don Molter a career counselor in Indiana Make sure your child develops good study skills Encourage your son or daughter to start thinking about different careers and the education needed Don t let the bleeding disorder be an excuse for poor school performance See Moms Offer Advice Get Kids Involved Send kids to camp so they see others in the same situation out there having a ball Molter urges Get them involved in a teen leadership program which gives teens a chance to get together throughout the year and to participate in career related activities Through such contacts teens become more comfortable with their bleeding disorder I went to camp for many years and was on the leadership task force for NHF says Rachel Miller at Emerson I had a lot of friends with hemophilia and I could talk about my illness with them It helped me see that it doesn t have to be this terrible thing and if I can deal with it positively then other people will react positively Pave the Way for Independence Encourage high schoolers to gradually take responsibility for their healthcare under your supervision Remember that when your child turns 18 privacy laws prevent the HTC campus health department or other medical staff from revealing medical information to you without your child s permission Most kids are comfortable signing a release so parents can still be in the loop but it s wise to talk to your teen about that says Lisa Maiale Howell a social worker in Philadelphia When your teen is ready to visit and apply to colleges your HTC may be able to put you in touch with another family who has just gone through the process Check college Web sites or the Association on Higher Education and Disability to see if the schools your teen likes have an Office of Disability Services Most larger ones do An excellent contact point before and certainly after acceptance this office can help with such things as a dorm assignment closer to classrooms a private room if warranted and notifying faculty that the student has a condition that might require special considerations Keep an Open Mind Don t tell your kid to go to a school close by just because you re worried about him having a problem says Miller Ultimately you have to decide where they re going to get the best education Social worker Elizabeth Fung agrees Parents have a lot of influence on a child s college choice and may be very outspoken about wanting their kids to stay nearby she says We tell them that with a cell phone you have a lot of connection and the farther away they go the more they will learn about life On the other hand for some children it is important to avoid pushing them out of the nest too soon Some young people may be more comfortable with a gradual transition going to community college and living at home then moving in with friends and finally transferring to a four year college Let Go But Not Entirely Do what you can to smooth the transition When you take your teen to college buy a dorm size refrigerator and containers for supplies Make sure your child has a medical alert bracelet emergency wallet card and all vital contact information Visit or at least locate the nearest hospital Then back off and let the kid be a college student Molter advises Let him experience homesickness and make it clear you want him to stay there and get acclimated If he has a bleed you re not going to come there and take him for his CAT scan or whatever But don t check out completely It s not wrong to check on their hemophilia status after they get to school says Maiale Howell Stay in touch by phone or e mail to make sure they re doing their prophylaxis And be available within reason Karen Wyatt

    Original URL path: http://www.hemaware.org/story/college-bleeding-disorder (2016-02-18)
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  • Financial Aid Facts
    lot of loans or even not going to school at all he says Do a diverse search Scholarships are often given for merit or financial need so be open to either type Always fill out a Free Application for Federal Student Aid FAFSA even if you re not sure that you re eligible The application opens January 1 2015 and the deadline is March 10 2015 If you qualify for federal aid accept everything you are offered initially Molter says You have until about July to make a final decision Fastweb com also is a good research source Further the National Hemophilia Foundation s NHF s website hemophilia org has a list of scholarships for which you may qualify Molter also advises that you meet with your school guidance counselor and a social worker at your hemophilia treatment center HTC You may even be able to qualify for work study programs a federal Pell Grant which does not have to be repaid and or state aid And don t be afraid to apply to private colleges Many have internal merit based scholarship programs which can reduce costs Molter says Watch out for scams You should never have to pay to apply for scholarships Molter says Also apply for aid from accredited schools These are schools approved by an accrediting agency a nongovernment agency that reviews schools in a particular region or subject area Try to avoid schools that exist only for profit They typically don t accept federal grants and prefer private loans says Molter Some admissions marketing staff also can work on commission so they may not offer the most reliable educational advice he adds Ask your local accredited college or university if it accepts transfer credits from the school in question he advises If a particular school doesn

    Original URL path: http://www.hemaware.org/print/1258 (2016-02-18)
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  • Emotional Protection
    isn t true The stigma against mental illness is rapidly going away Hammel says Particularly after the tragedy of Robin Williams we recognize that depression and anxiety are medical illnesses no different from hemophilia and other bleeding disorders When feelings of sadness interfere with normal life they should be taken seriously Hammel says For instance if they prevent you from going to work or school or from participating in activities you enjoy it is time to seek advice from a medical professional Parents of a child with a bleeding disorder should watch for changes in their child s mood behavior grades friendships appetite or sleep says Erin Hawks PhD a psychology fellow at the University of Oklahoma Health Sciences Center in Oklahoma City Any of these symptoms can be signs of anxiety worry or depression When the individual hears from their significant other family or friends that they are disengaged withdrawn unfocused cranky or irritable that s often when individuals start to realize there s a problem and that it needs to be addressed says Mina Nguyen PsyD psychologist at the Oregon HTC and assistant clinical professor of pediatrics at Oregon Health Science University in Portland When diagnosing clinical depression mental health practitioners consider duration and persistence of symptoms Nguyen says If a person s feelings of depression or anxiety last all day or continue for months treatment is likely needed See Detecting Depression sidebar on p 40 for a detailed list of the most common symptoms of clinical depression If you or a family member is experiencing signs of depression or other mental health concerns let healthcare professionals determine whether the symptoms are chronic Even if it s transient sadness or stress even if it s not diagnosable it can still affect how well you take care of yourself or your child Buranahirun says If there are any concerns it would be a good idea to bring it up at your HTC appointment Just open it up for discussion Although it is becoming increasingly common for HTCs to have mental health professionals on site all members of the healthcare team can assist with mental health concerns Share those concerns with a healthcare provider you feel comfortable with whether it s a social worker physician nurse or therapist says Buranahirun Any HTC professional can help guide patients or family members through the proper channels to get the help they need But give yourself time to find someone you have rapport with You may need to try more than one provider to find the right fit It s important to find someone willing to closely follow you until you are experiencing some relief from your symptoms Iannone says Steps to healing Discussing the changes in mood or feelings you are experiencing is the first step to making things better Although you may start the conversation with your HTC doctor or nurse he or she may refer you to your social worker a psychologist or a counselor Our MDs and nurses are

    Original URL path: http://www.hemaware.org/print/1222 (2016-02-18)
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  • Doctors in the Making
    person Children s Hospital Oakland Patel s hemophilia treatment center HTC provided daily physical therapy A social worker educated his school teachers on his medical needs and helped his parents navigate the many demands of his bleeding disorder Camp Hemotion the bleeding disorders camp of the Hemophilia Foundation of Northern California is a place Patel thrived He s gone every year since he was 10 first as a camper then as a counselor His camp experience inspired Patel to organize camps for kids with bleeding disorders in India Since 2008 he s held camps in Pune Chennai and Mumbai his hometown There s value in treatments that go beyond the biomedical beyond just factor therapy and other drugs like support groups and camps says Patel There s the inherent value in nurturing the entire person Goldberg a student at Indiana University School of Medicine in his hometown of Indianapolis has mild hemophilia A Over the years he has volunteered at his local chapter Hemophilia of Indiana HOI doing everything from stuffing envelopes and answering phones to leading the teen group at his state s annual meeting Recently he s had paid summer internships with the Indiana Hemophilia Thrombosis Center IHTC assisting researchers there with statistical analysis and database work Goldberg has also volunteered at Camp Brave Eagle run by IHTC and HOI There he had an opportunity to develop his bedside manner as a counselor to the kids in his cabin When I would take them to get infused we d talk about what was going on and if they were nervous how to get past that recalls Goldberg Future plans Patel whose undergrad degree is in psychobiology from the University of California Los Angeles plans to be a pediatrician What attracts me is the opportunity to work with families

    Original URL path: http://www.hemaware.org/print/1224 (2016-02-18)
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  • Mobile Health for Hemophilia
    widely They need to be providing feedback to patients who are providing the data Research has shown that apps help improve patients health outcomes A 2013 study of people with type 1 diabetes in Australia found that those who used a smartphone app combined with text messages from a clinician and regular medical care had better blood sugar levels after nine months than those who didn t The results were published in the Journal of Medical Internet Research Skinner hopes that apps for hemophilia will show the same promise He began using the app MicroHealth Hemophilia created by an independent developer about four years ago to log his factor usage and infusions The app s features are similar to HemMobile s It s time to take the next step says Skinner The goal is real time feedback he says Few of the apps link in to electronic medical records That s ultimately where we need this to go That feedback will be key to decision making Currently patient logs can be captured within the American Thrombosis and Hemostasis Network ATHN Advoy database The web based tool affiliated with HTCs across the country is the only database that nationally logs patient bleeding and infusion patterns Patients and healthcare providers can use it to gather and share treatment infor mation and detect trends that may improve individual clinical outcomes An app in the making Skinner is anxiously anticipating the next generation of apps that will bridge the gap between tracking the condition and actually improving it One such app developer is Daniel Bond 60 an aerospace engineer from Galveston Texas who has severe hemophilia B Bond bought his first iPhone in 2007 Around the same time he was going through the burdensome task of paper logging his infusions and bleeds After a knee joint replacement surgery he used a spreadsheet to manually calculate his factor level and next infusion time When he checked his calculations against his blood tests he found that they were fairly accurate I realized I could be putting this same information into an iPhone app to make it easier says Bond But he wanted the app to go beyond that All the logging gives you a historical background but I wanted something that would help me right now So he developed iBleed a forthcoming mobile app that will not only track bleeds and infusions but will also predict key pieces of information Those include the user s current factor level how many vials of factor are on hand and how much is needed to achieve the desired level in the bloodstream Bond s app also allows the user to enter personal half life as the basis for the calculations creating more individualized prophylaxis schedules It also can send automatic notifications to your HTC about when you infuse or have a breakthrough bleed Three years ago a group of mobile app developers built a prototype which Bond took to the University of Texas Gulf States Hemophilia and Thrombophilia Center

    Original URL path: http://www.hemaware.org/print/1221 (2016-02-18)
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  • Remembering Ryan White
    It made me kind of worry Before Ryan s AIDS diagnosis leaked to the public Kleiman urged Jeanne to tell her son A few days after Christmas 1984 Jeanne disclosed Ryan s diagnosis Am I going to die he asked He begged his family to pretend he didn t have AIDS Ryan did not want people s pity I just want to go on and go ahead with my life he said During his month long hospital stay Ryan had an epiphany Mom the Lord just came and spoke to me he said one day He told me I had nothing to fear that I was going to be taken care of After that Ryan had an inner peace Jeanne says Acceptance and information But Jeanne was far from peaceful Every cough every fever I worried about whether it was going to be the last she says She questioned everything but lacked answers I want to know all there is to know about this disease Jeanne told Kleiman He recommended the newly formed American Foundation for AIDS Research amfAR in New York The people who are fighting this disease now and trying to do something about it are mostly the gay community Kleiman told Jeanne at the time From the start the Whites were embraced by the community I needed people and I felt the comfort Jeanne said As Ryan s story made the headlines sympathetic supporters surfaced Elton John flew the Whites to California to attend his concerts and enjoy a day at Disneyland Rob Lowe took Ryan shopping for sunglasses Former President Ronald Reagan invited Ryan to his home Invaluable legal aid came from Charles Vaughan Sr an Indiana attorney Do you really want to go to school that bad he asked Ryan It could get ugly Ryan answered I can take it In August 1985 Vaughan filed a lawsuit in the US District Court in Indianapolis for Ryan to be readmitted to school As the court case dragged on for months Ryan pressed on The teachers think they re going to prolong this in the courts but they better not hold their breath Ryan told Jeanne They think I m going to die but I m going to get to go back to school Seeing her son s feistiness bolstered Jeanne It gave him a purpose to live she says A tale of two schools Elton John befriends Ryan and later establishes the Elton John AIDS Foundation Ryan wanted to be like any other teenager to go to school have friends and blend in But the treatment he got at his middle school prevented that The fear that AIDS could spread through casual contact was still widespread So when Ryan returned to school in February 1986 half the students stayed home He was not allowed to take PE and he had to use separate drinking fountains and bathrooms His locker was vandalized and students jeered and teased him in the halls The community also ostracized Ryan Restaurants

    Original URL path: http://www.hemaware.org/print/1220 (2016-02-18)
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