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National Hemophilia Foundation
The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders through education, advocacy and research.
Telephone: 212-328-3700
http://www.hemophilia.org

CFC Code: 12002
IRS EIN Number: 13-5641857
AFR: 18.9% What's this?

Dr Metz

As a physician, Dr. Richard Metz knows what it's like to be in a difficult situation. Yes, Michael, his son has hemophilia. Dr. Metz has witnessed firsthand the issues — medical and logistical — that come with the disease.

Yes, he's served on National Hemophilia Foundation board. He's seen the struggles and the triumphs of promoting interest in a condition that the public doesn't understand, or want to understand.





Mon, 22 Jun 2015

Accomplished pediatric researcher advances study of pediatric bleeding disorders.

HemAware is conducting a series of interviews with recipients of the NHF-Baxter Clinical Fellowships. The fellowships are funded through the generous support of Baxter Healthcare Corporation. The objective of this grant is to increase the number of skilled clinicians committed to providing comprehensive care for individuals with bleeding and clotting disorders, and to prepare candidates for academic careers.

This interview was conducted with Jordan A. Shavit, MD, PhD, assistant professor of pediatrics, University of Michigan, Ann Arbor. He is a pediatric hematologist/oncologist at the C.S. Mott Children’s Hospital in Ann Arbor. The fellowship was funded from 2006-2008.

Why did you decide to study medicine?

For students who excel in math and science, it is often assumed that they will pursue a career in medicine, says Shavit, who grew up in Highland Park, Illinois. “I was also always a very social person and I like interacting with people, so that seemed like a natural combination.”

What initially attracted you to hematology?

A summer fellowship in a coagulation lab at Loyola University as an undergraduate was Shavit’s introduction to hematology. “I learned a lot about some of the anticoagulants that are now standard of care, but were just being tested in pre-clinical models back then.”

In graduate school at Northwestern University (NU) in Evanston, Illinois, Shavit worked in a lab whose emphasis was hemoglobin switching and hematopoiesis, the formation and development of blood cells. “I liked looking at blood under a microscope,” he says.

In the combined MD/PhD program at NU, Shavit attended medical school for two years, completed his PhD, then resumed medical school. When reviewing residency options, he knew he wanted to subspecialize.

“I liked hematology/oncology in general because there was a lot of strong evidence-based practice and it was a very team-oriented approach to taking care of patients.” Shavit chose pediatrics because he likes kids.

How did the training and mentorship you received as an NHF-Baxter Clinical Fellow affect your decision to pursue clinical care and/or research in bleeding disorders?

“The mentorship that I received truly dictated my career,” says Shavit. Working in the University of Michigan laboratory of David Ginsburg, MD, who had cloned the genes for von Willebrand disease and combined FV/FVIII deficiency, Shavit discovered how to combine his two interests: research and patient care.

“Dr. Ginsburg is a highly accomplished physician-scientist. What the Baxter Fellowship enabled me to do was go into his lab and learn from somebody who had put those two areas together.” But lab time wasn’t solely for bench work. The two often discussed clinical care and its relationship to their lab work. “What I learned from him actually informed how I take care of patients to a certain extent.”

Are you still engaged in the clinical aspects of patient care or bleeding disorders research? In what aspect of care are you most interested?

Years ago, someone gave Shavit this piece of advice: “You’re going to find a little corner of the world and that’s going to be your specialty--that’s the patients you’ll take care of and that’s the research that you’ll do.” Shavit’s corner of the world is now centered in Michigan.

He enjoys his half-day in the clinic each week, overseeing the care of pediatric patients with bleeding and clotting disorders. The rest of his time is devoted to research. “For example, 10% of severe hemophilia patients don’t bleed very much,” he says. Shavit hopes to help answer the question of whether they should be receiving prophylaxis, as other genetic factors may influence an individual’s bleeding patterns, not just the mutations in factors VIII or IX.

“We’re trying to identify the other genetic factors that interact with those primary mutations, leading to the clinical phenotypes that we see in our patients.”

Did your NHF-Baxter Clinical Fellowship assist in advancing your own position at your institution? Or did it serve as a building block to further your career in coagulation?

Shavit says that the fellowship enabled him to do both. The funding provided him with the time he needed to engage in research. “You can’t be successful in a laboratory science career without that kind of protected time.”

The fellowship also served as a building block, Shavit says, because he is still heavily involved in research pursuits that he began thanks to it. It also had a side benefit for someone as social as Shavit is—introducing him to other fellows and mentors. “I was meeting people in the field anyway, but the fellows and mentors became a tight-knit group and I got to know people with whom I might not have otherwise interacted closely.”

Where do you think bleeding disorders research and clinical care may be headed in the near future? In the next decade?

In 1992, when Shavit was entering his combined MD/PhD program, friends and family asked what he thought about gene therapy. He told them he thought it was about two decades away. Now in 2015, his prediction has come true. “And so it’s about 20 years later, we’ve had the first successful trial (in hemophilia),” he says with a smile, because he is quick to admit that “I would have given the same answer 5 years ago.”

Although gene therapy holds promise for people with bleeding disorders, Shavit does have some reservations about its safety for children. “The question of whether we will be comfortable administering gene therapy to young children with hemophilia still needs to be addressed given that infusion therapy is highly effective and generally safe.”

Shavit is interested in the plethora of long-acting factor products coming to market. The hematologist’s role will entail “sorting through those and figuring out which ones are appropriate for which patients.” Despite these advances, Shavit says breakthroughs for better treatment options are still needed for patients with mild bleeding disorders and those with inhibitors.

When you are not working, how do you relax or escape from your work?

Shavit’s down time is spent with his family, not on personal pursuits. “Unfortunately, I don’t feel that I have a lot of time for hobbies,” he says. “My hobby is my kids and my family.” His kids, ages 13 and 10, are active. Over the years, Shavit has coached their soccer and basketball teams. “They’re involved in a lot of extracurricular activities, including academic ones that have led to competition at national tournaments.” He says he enjoys nothing more than “just to hang out with them when I can in our free time.”

Thu, 11 Jun 2015

Casi 350 miembros de la comunidad de personas con trastornos hemorrágicos se congregaron del 24-27 de febrero en Washington, DC, para el evento anual de promoción de la misión de la NHF. El evento les da a las personas con trastornos hemorrágicos y sus familiares la oportunidad de reunirse con funcionarios electos a fin de tratar asuntos cruciales para esta comunidad.

Este año, NHF les pidió a los concurrentes que promuevan tres temas. El primero es preservar los fondos para los programas federales de hemofilia en la Oficina de Salud Materna e Infantil (Maternal and Child Health Bureau) y el Centro de Control y Prevención de Enfermedades (Centers for Disease Control and Prevention). El segundo fue apoyar legislación potencial para hacer que el factor de coagulación se pague por separado, en vez de agregado, en centros de enfermería especializada (skilled nursing facilities o SNF). El último fue conseguir que los legisladores auspicien la Ley de Acceso a Tratamientos por Pacientes (Patients’ Access to Treatments Act o PATA), que impediría que el factor de coagulación se pase a un nivel especial en la lista de medicamentos cubiertos, que forzaría a los pacientes a compartir el gasto y pagar altos costos.

La noche del miércoles, los concurrentes recibieron capacitación muy útil antes de visitar el Capitolio al día siguiente. El equipo de política pública de NHF y especialistas en lobby hicieron una detallada presentación sobre los asuntos pertinentes, pasaron un video sobre lo que se debe y no se debe hacer y ofrecieron consejos en el uso de medios sociales para comunicarse con legisladores. Luego hubo una animada sesión de preguntas.

Para atender las necesidades de su comunidad de adultos jóvenes, NHF inauguró la Cumbre de Voceros Jóvenes (Youth Advocacy Summit) para personas de 18 a 24 años. El grupo habló sobre cómo velar por sus intereses y asumir la responsabilidad respecto a los  trastornos hemorrágicos en casa, la universidad y el trabajo. El nuevo esfuerzo fue financiado por una subvención para el Empoderamiento Local para Generar Apoyo (Local Empowerment for Advocacy Development o LEAD) de CSL Behring.

Durante el almuerzo en el Centro Regional de Promoción (Regional Advocacy Center), auspiciado por Novo Nordisk, los líderes de estados con múltiples filiales se congregaron para hablar sobre formas de colaborar eficazmente con respecto a asuntos locales que afectan a su comunidad.

Después de las visitas, los promotores disfrutaron en la cena de reconocimiento a voceros estatales, que destacó los éxitos de los programas de promoción estatal de las filiales locales. NHF agradece a Novo Nordisk por auspiciar la cena.

“Es importante que la comunidad de personas con trastornos hemorrágicos vele por sus intereses a nivel nacional, pero la promoción a nivel estatal es cada vez más importante”, dijo Michelle Rice, vicepresidenta de política pública y relaciones con partes interesadas de NHF. Durante la capacitación sobre promoción estatal, las filiales recibieron consejos de cómo trabajar con legisladores estatales para proteger el acceso de la comunidad a atención y medicamentos económicos en un entorno de salud que cambia.

Desde que los promotores de NHF se reunieron con sus funcionarios electos en febrero, han presentado la propuesta de PATA ante la Cámara los Representantes David McKinley (R-WV) y Lois Capps (D-CA). El 22 de abril, contaba con el apoyo de 66 legisladores. El Rep. Aaron Schock (R-IL), el congresista que estaba planeando presentar la propuesta de SNF, ya no es miembro del Congreso. El personal de NHF en Washington se ha estado reuniendo con muchos de los legisladores que expresaron interés en presentar la medida. Se tiene previsto que esta se presente en mayo ante la Cámara de Representantes.

“Cuando todos ustedes se unen y se pronuncian al unísono, se pueden lograr cosas fabulosas”, dijo Val D. Bias, el CEO de NHF, a un grupo numeroso de personas que acudieron a Washington Days 2015. 

Mon, 01 Jun 2015

Caprice Sauter y su esposo, Joe, sabían que existía la posibilidad de que el niño que llevaba en su vientre tuviera hemofilia severa si era varón.

A los cinco meses de embarazo, el equipo médico de Caprice confirmó el temor de la pareja: el pequeño tenía hemofilia B severa. Joe estaba preocupado: “Pensaba que él y su hijo no podrían hacer lo que él hizo en su niñez”, dijo Caprice.

Un mes más tarde, el equipo médico de la pareja los puso en contacto con el Puget Sound Blood Center en Seattle, que serviría como centro de tratamiento de hemofilia para la familia. En vez de simplemente programar una serie de citas, los invitaron a un tipo diferente de reunión, un campamento familiar.

Las filiales de la Fundación Nacional de Hemofilia (National Hemophilia Foundation o NHF) en todo el país tienen campamentos familiares para niños con trastornos hemorrágicos, sus padres y hermanos. Durante el campamento, todos los miembros de la familia afectada por el trastorno hemorrágico aprenden, se ponen en contacto y se divierten en un entorno seguro.

Tratamiento para el alma

Cuando fueron invitados a Camp Ivy, que ofrece la filial local, Bleeding Disorder Foundation de Washington, los Sauter esperaban un entorno clínico. “Pensamos que habría niños en sillas de ruedas o muletas”, recordó Caprice. Pero vieron algo totalmente distinto. “Los niños estaban haciendo toda actividad imaginable y típica de un campamento de verano: natación, carreras, baloncesto, paseos en bote. Era imposible saber quién tenía hemofilia y quién no”, dijo.

Los campamentos familiares, que pueden durar un fin de semana o toda la semana, son financiados por farmacéuticas y filiales de la fundación. En la mayoría de los casos, las familias van gratis o pagan muy poco. Se programa una combinación de actividades divertidas y educativas, como presentaciones por expertos médicos y capacitación sobre la infusión de factor.

En los campamentos, pueden conocer a otros padres. Pueden comparar notas sobre tratamientos, consejos médicos y formas de enfrentar emergencias en casa. Los padres también intercambian consejos sobre maneras de hacerles frente a los problemas sociales y emocionales de tener un hijo con un trastorno hemorrágico.

Lo más importante es que, en los campamentos, los niños con trastornos hemorrágicos pueden hacer lo que hacen todos los niños. Sus hermanos logran comprender mejor la enfermedad del niño afectado y aprenden a ser comprensivos y a apoyarlos. Además, sus padres pueden lograr cierta tranquilidad con respecto al trastorno hemorrágico de sus hijos.

El objetivo de los campamentos familiares es infundir confianza y enseñar cómo prevenir y tratar hemorragias. La investigación indica que surten efecto. Los resultados de un estudio del 2013 en Children’s Healthcare de 102 niños con trastornos crónicos que acudieron a campamentos reveló que uno de los principales beneficios fue la capacidad de fijar objetivos personales y alcanzarlos. Después de ir a campamentos, los niños son más capaces de formular estrategias para resolver problemas.

Los campamentos también son de valor para los padres. Caprice recuerda claramente la sesión que cambió su perspectiva y la de Joe sobre tener un hijo con un trastorno hemorrágico. Fue un panel de preguntas a expertos, entre ellos adolescentes y jóvenes con trastornos hemorrágicos. Uno de los panelistas era Henry Hudson, galardonado nadador que competía en una universidad cercana, quien tiene hemofilia B severa, el mismo diagnóstico de Conail, el hijo de los Sauter.

“Le preguntamos de todo: sobre sus padres, llevar siempre el factor, incluso salidas románticas”, dijo Caprice. “Fue un fabuloso ejemplo de lo que nuestro hijo podría ser: un atleta universitario con hemofilia severa”.

Los Sauter ahora llevan a todos sus hijos al campamento: Conail, quien tiene 13; su hermano Cody, de 10, quien no tiene la enfermedad, y su hermanita, Callie, 9, portadora con síntomas. “El campamento familiar nos ofreció una luz al final del túnel”, dijo Caprice. “A pesar de que están presentes médicos y enfermeros del centro de tratamiento, más que nada es un tratamiento para el alma”.

Las familias se vuelven más eficaces

Los campamentos familiares ofrecen oportunidades para que las familias con diagnósticos recientes aprendan de familias con experiencia, afirmó Amanda Turner, directora ejecutiva de la filial de Ohio central de NHF. Dirige el Campamento de Educación Familiar de esta filial en Hocking Hill. “Las familias nuevas aprenden mucho de otras familias que les muestran que van a estar bien”, agregó.

Como muchos otros directores de campamentos en todo el país, Turner trabaja con facilitadores de GutMonkey, compañía de aventuras educativas especializada en crear actividades para campamentos dedicados a personas con trastornos hemorrágicos y otros programas médicos.

“El trabajo que hacemos en realidad es aumentar la confianza en la capacidad de resolver problemas”, dijo Pat Torrey, fundador de GutMonkey. Su grupo ayuda a familias a enfrentar mejor diferentes aspectos de la vida, entre ellos enfrentar el estigma, enfrentar desafíos y administrar atención médica.

Según el campamento, el equipo de Torrey organiza aventuras ­supervisadas, como una serie de actividades con sogas, como también paseos en kayak y canoa. Los asesores también son árbitros en postas familiares, competencias de construcción de castillos de arena o juegos que propician conversaciones íntimas. GutMonkey basa las actividades en las necesidades individuales del campamento.

Dado el mayor nivel de actividad física, es inevitable que algunos chicos se golpeen y les salgan hematomas durante el campamento familiar. “Pero por eso están los padres allí, para aprender a lidiar con eso”, indicó Turner.

Poder bajar la guardia

En el 2010, la familia de Carol Firth asistió a su primer campamento familiar, de New England Hemophilia Association (NEHA) en Moultonborough, New Hampshire. Su hijo de 10 años, Andrew, nació con un caso severo de la enfermedad de von Willebrand (VWD) tipo 2B. Sus hijas, Ciara, de 8, y Sarah, de 12, no fueron afectadas.

Algo cambia en Andrew cuando está en el campamento. Su ansiedad social, el temor de ser distinto y la timidez desaparecen. “El ambiente es tan seguro y de tanta aceptación, que siente que puede bajar la guardia”, dijo su mamá.

El verano pasado, Andrew participó con otros niños en un acto cómico sobre una banca invisible. “Se veía tan natural y relajado”, comentó Carol. “Creo que me dio esperanza ver que existe esa naturalidad y calma en él”.

Carol disfruta sentarse alrededor de las fogatas junto con otros padres para relajarse después de una jornada de diversión e instrucción. Derriten malvaviscos, cantan y actúan. “Es un lugar seguro en que sientes que te comprenden y aceptan”, aseguró.

Campamento intensivo de autoinfusión

Muchos campamentos familiares invitan al personal clínico de los centros de tratamiento a realizar una sesión sobre infusiones. Los padres recién incorporados a la comunidad pueden aprender, mientras que se enseña a los niños a hacerlo ellos mismos. Con ello, los chicos superan el temor a las autoinfusiones y aumenta su confianza para poder hacerlas al volver a casa.

El año pasado una pareja llevó a su sobrino al campamento en Hocking Hill, Ohio. Acababan de volverse los apoderados del pequeño y parecían abrumados por la responsabilidad de encargarse de su trastorno hemorrágico. El tío pidió observar la sesión de entrenamiento sobre infusiones. “Para cuando volví, estaba pinchando a alguien con una aguja”, recordó Turner. “Se notaba lo emocionado que estaba de probar algo que hacía poco le parecía espantoso”.

Carol alentó a su hija mayor, Sarah, a aprender a ponerle infusiones a Andrew como sustituta. “Le dije que si lo hacía yo sola, quizá no estaría tan calmada y que me encantaría que ella aprendiera también”, dijo Carol. Por lo tanto, Sarah tomó la clase de infusiones en el campamento y se sintió muy orgullosa de sí misma. “Es una gran tranquilidad para mí saber que no soy la única que lo puede hacer”, afirmó la madre.

Caprice describe el campamento familiar como “una sesión intensiva sobre autoinfusiones”. Cuando Conail tenía 11 años, una mañana antes de ir a la escuela, Caprice lo llamó para hacerle el tratamiento. “Lo voy a hacer yo mismo”, respondió el niño. Ese verano, Conail aprendió a hacerse infusiones en el campamento familiar. De regreso en casa, una enfermera del centro de tratamiento le enseñó a Conail a hacerlo sin ayuda pero con supervisión. “Es increíble todo lo que pueden hacer estos chicos”, comentó Caprice.

Asesores que inspiran

Cuando le preguntaron recientemente a Kevin Sorge, director ejecutivo de NEHA, cuál es el secreto del éxito de su campamento, no titubeó. “Son los asesores”, afirmó.

El campamento familiar gratuito de la filial recluta aproximadamente 30 a 40 asesores para ayudar a organizar las actividades del campamento. Muchos de estos asesores iban a campamentos cuando eran menores. “Recuerdan lo nerviosos o asustados que estaban”, dijo Sorge. Los asesores quieren ayudar a la próxima generación de niños con trastornos hemorrágicos que van al campamento.

En el campamento familiar de NEHA, los asesores dividen a los niños más pequeños en grupos, por edad, explicó Sorge. Un grupo de niños de 6 años puede tener cuatro asesores de 16 a 25 años. “Eso lo hace perfecto para el aprendizaje”, indicó Sorge. “Muchas veces los chicos se sienten más cómodos de contarles cosas a los asesores que a sus padres”.

Tener adolescentes y jóvenes con trastornos hemorrágicos como asesores inspira a los chicos menores, dijo Sorge. Estos notan que sus asesores tienen solo unos cuantos años más que ellos y que están controlando la enfermedad en la secundaria o universidad.

“Los chicos menores están viendo su futuro y dándose cuenta de que no tiene límites”, aseguró Sorge. 

Tue, 12 May 2015

Skip the gym, now you can exercise the do-it-yourself way at home using bodyweight exercises. Bodyweight exercises, which include pushups and situps, build muscle, burn calories and boost your heart health. Plus,  your workout won’t cost you a dime. Such exercises require only the weight of your own body, rather than barbells or other weight training equipment. These are all good reasons why the American College of Sports Medicine predicts that bodyweight training will be the No. 1 fitness trend in 2015.

For people with bleeding disorders, bodyweight exercises can be beneficial. They increase strength, and the stronger your muscles, the better they can protect your joints from bleeds.

Follow your PT’s lead

Before beginning a bodyweight exercise program, check in with your health team at your hemophilia treatment center (HTC), especially your physical therapist (PT). The staff can help you plan a workout that matches your abilities and won’t tax your joints.

“Your PT knows you and knows whether, for example, squats are going to be difficult for you because of knee or ankle problems,” says Kim Baumann, MPT, of the Center for Bleeding and Clotting Disorders at the University of Minnesota Fairview Medical Center in Minneapolis. You will also learn how to do each exercise correctly. “You need to practice proper body mechanics to avoid injury,” she says. “For example, if you do a squat and let your knees go past your toes, you’re putting tremendous pressure on your knees.“ Such pressure can cause joint injuries or even bleeds.

There are many different bodyweight exercises you can do, each of which can be modified to match your fitness and abilities. First, focus on exercises that are comfortable for you. “As you adapt to your new workout, you can vary it to make it more challenging,” says Heidi Purrington, PT, of the Hemophilia and Thrombosis Center at Phoenix Children’s Hospital in Arizona. For example, if you’re new to exercise, you may need to start with functional exercises. These include sit to stand, reaching into cupboards, stepping sideways along the counter in the kitchen, or leaning forward and to the sides and back while sitting. Your PT can help you decide how many to start with and what goals you should set

For a simple exercise you can do every day, Purrington recommends stand-up/sit-downs. With your hands at your sides, sit in a chair, stand up and then sit back down. Repeat. You can vary the difficulty by using a higher or lower chair, not using your arms to help and increasing the number of repetitions you perform.

“You can also use bodyweight exercises to improve your balance,” says Baumann. Single-leg stands involve lifting one foot, bending your knee and holding your foot a few inches off and perpendicular to the floor for a half-minute or so. Once you feel comfortable doing them on a solid surface, try standing on a pillow. For a real challenge, do them with your eyes closed. You can even do single-leg stands while brushing your teeth.

Modifying and adjusting

Bodyweight exercises can also be modified to work around problem joints. “There are lots of ways to do strength training, even if you have limitations,” says Baumann. For instance, if you like pushups but have bad elbows, adjust how low you go or do them against the wall. The same goes for how low you squat.

Go slowly when you get started. Together with your PT, plan when to take each exercise to the next level. Too much too soon may cause an injury that knocks you out of commission.

If you have the time, do a whole workout every other day. Otherwise, do a little bit of your routine every day; dividing it into chunks of time that fit your schedule. Try alternating between upper-body exercises like shoulder shrugs, lower-body exercises such as squats and core exercises, which include situps and planks, says Baumann.

Work some variety into your workout. That way, you keep things interesting as you continue to challenge yourself. Purrington shares pages of exercises with some of her patients. She recommends they choose one or two exercises from each page for each session. Just be sure to give each major muscle group at least a day between workouts.

Although bodyweight exercises require no special equipment, you will need a good pair of shoes. Running or cross-training shoes provide joint support and prevent falls. Also, consider a yoga mat, especially if you like to exercise outdoors or on a slippery hardwood floor.

Look for the first signs of progress in just a few weeks. Soon you’ll be doing a few more repetitions of each exercise. In addition, everyday activities like walking to the park with your kids will become noticeably easier. In a few months, exercise will become a more natural part of your daily routine, says Purrington. Plus, your mental health will improve. “The more you exercise, the better you will feel about things in general,” she says.

Learn More

For videos of several bodyweight exercises, visit Mayo Clinic.

For a comprehensive selection of beginner bodyweight exercises, visit Ace Fitness’s Exercise Library.

Tue, 28 Apr 2015

In each issue of HemAware, we spotlight people in the bleeding disorders community. Here, we talk to Skylar Lobdell, a 21-year-old from Elmore, Vermont, about his passion for distance running and his experience living abroad. Skylar has severe hemophilia A.

When did you start running?

I started running in the sixth grade when I joined my middle school cross country and track teams. I’d played baseball and soccer, but to be honest, I wasn’t terribly good at either. Since I could run around the bases or across the field quickly enough, I thought I might be a little better at just running as a sport. Once I began running longer distances, I came to really enjoy it. Although running is an individual sport, you bond with your teammates very intensely during training. I really enjoy this aspect of the sport, and for me it is very important to run with other people. Being stuck with someone on a long run gives you little choice but to get to know each other.

How do you manage your bleeding disorder while engaging in athletic activity?

I need to make sure that I am doing my prophylactic treatments on schedule and paying attention to what my body is telling me. If I feel like I might be developing or am about to develop a bleed, I treat right away, and then I take a little time to rest. It’s also important to plan your schedule carefully so that you can maximize the effectiveness of treatments. If I know that I have a big event coming up—a longer or more difficult race, for instance—I will adjust my schedule so that I infuse right before the event.

You’re currently studying abroad at the University of St. Andrews in Scotland. How did you prepare for that with a bleeding disorder?

Traveling with hemophilia requires careful consideration. Access to care in the UK is relatively easy, because as a student, I qualify for the National Health Service (NHS), which is able to provide me with clotting factor. Before coming over, I did some research to find out if I would be covered by the NHS while studying, and located the nearest hemophilia treatment center (HTC). Locating HTCs is important no matter where you are traveling. Whenever I go to a new place, I always find out where the closest HTC is in case of emergency. I also always bring an ample supply of clotting factor, as this can often be difficult to obtain in a foreign country.

Are there any differences between care and treatment in the US and Scotland?

The only major difference is that because the UK uses the NHS instead of private healthcare providers, the government has contracted a single company to provide clotting factor. This meant that I did have to change products when I came over. But I have been perfectly satisfied with the treatment I am on now. The system seems to work quite well.

Do you have any advice for anyone your age who is concerned about participating in sports while having a bleeding disorder?

Don’t think of yourself as being limited by your bleeding disorder. Obviously there are some sports that are probably not a good idea for a person with hemophilia. These are mostly high-impact sports with a relatively substantial risk of injury, even for people without a bleeding disorder. I’ve found that as long as I am careful about what I do and stay on top of my treatment plan, it is relatively easy to overcome any concerns or perceived limitations. If something seems interesting, get out there and give it a try!


The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research.

Your support enables us to fund vital research and provide key educational programs and public policy initiatives to help people with bleeding disorders such as hemophilia and von Willebrand disease.

RESEARCH

  • NHF Career Development Awards promote research endeavors of established investigators and are awarded to scientists conducting basic, pre-clinical and clinical research. NHF has granted 23 Awards since 2000.
  • NHF/Baxter Clinical Fellowships exclusively sponsored by Baxter Bioscience is provided to physicians who are interested in the sub-specialty of bleeding disorders treatment. 24 fellowships have been awarded since 2003 and will provide the future of physicians caring for people with hemophilia.
  • Judith Graham Pool Postdoctoral Fellowships are awarded to scientists who have recently completed a doctoral, postdoctoral or residency training program. Their research is focused on biochemical and genetic aspects of bleeding disorders and provides funding to ensure the interest and future of researchers in bleeding disorders. 76 researchers have been awarded fellowships since 1972.

ADVOCACY

  • The state advocacy team has participated on various panels aimed at educating consumers and providers about the Affordable Care Act (ACA) and how it may impact those with bleeding disorders. These trainings reached consumers in more than 15 states, including but not limited to Indiana, Nebraska, Idaho, South Carolina, Texas, Florida, Washington & Oklahoma.
  • The NHF Insurance & Reimbursement Conference is designed to educate social workers and key insurance advocates about issues surrounding insurance and reimbursement in both the private and public payer markets. More than 55 participants attended this conference in 2011.
  • The state advocacy team created a "Personal Health Insurance Toolkit" designed to assist consumers in evaluating their health insurance options. The toolkit is comprised of a glossary of health care terms, Health Plan Comparison Guide, Health Plan Comparison Worksheet and a Personal Health Stat Sheet. The toolkit was rolled out to NHF chapter leaders at a series of regional trainings. 48 chapters were provided with training on the use of the toolkit.
 

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