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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

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.





Tue, 03 May 2016

A veces se aprende mucho de la televisión, en particular si uno ve episodios viejos del popular programa dramático de tema médico “House”, de FOX TV. Su protagonista principal, el Dr. Gregory House, interpretado por Hugh Laurie, usa un bastón, pero de la manera equivocada. En vez de agarrarlo con la mano de su lado sano, lo usa con su lado malo. En ocasiones existe un motivo para eso. “Es posible que debamos ir en contra de las reglas tradicionales y hacer lo posible para darle motilidad al paciente”, dijo la fisioterapeuta Sharon Funk, PT, DPT del Centro de Hemofilia y Trombosis de la Universidad de Colorado en Denver. “Si tienes un codo o un hombro malo, tal vez no puedas usar el bastón de ese lado”.

Aunque la vida a veces imita al arte, cuando se trata de implementos para caminar como las muletas, un andador o un bastón, lo mejor es pedir la ayuda experta del personal en su centro de tratamiento de hemofilia. Pueden enseñarle el debido procedimiento paso a paso. Es bueno saber cuándo es necesario usar un implemento para caminar y cómo usarlo. 

Lo básico sobre los implementos para caminar

Los implementos para caminar tienen diversos propósitos y ayudan a movilizarse después de una operación y cuando se tiene una hemorragia articular. Ofrecen estabilidad y mejoran el equilibrio cuando no se tiene el mismo nivel de resistencia y coordinación de siempre. Además, disminuyen el esfuerzo que debe hacer una articulación o extremidad adolorida. También ayudan a que se abra paso con seguridad en casa, la escuela o el trabajo. 

Siga unas cuantas reglas básicas cuando use un implemento para caminar. Póngase calzado con suelas de caucho o no resbaladizas, y evite los tacones. Mantenga la mirada en alto, hacia adelante, no los pies. Elimine todo aquello en casa o el trabajo que pueda hacer que tropiece o resbale, como alfombrillas, cordones que cuelguen y los derrames de comidas o bebidas. No deje en las escaleras cajas, ropa por lavar u otros artículos que puedan representar un obstáculo. 

Si está usando muletas o un andador para desplazarse, no lleve cosas en las manos o bajo las axilas. En vez, trate de usar una pequeña mochila o un bolso de cintura. Finalmente, si las puntas de goma de su bastón, muletas o andador están desgastadas o resquebrajadas, cámbielas. Si vive en un lugar con clima frío, adapte su implemento de caminar a las circunstancias con puntas especiales para el hielo, que se pueden comprar en una farmacia local. 

Sepa usar las muletas

Después de ciertos tipos de operaciones de las piernas y articulaciones, y si no puede soportar peso en los pies y piernas, es necesario usar muletas. Pero ver a un jovencito desplazarse en muletas sin problema por un centro comercial puede dar un falso sentido de seguridad. Todo adulto que ha tratado de usar muletas sabe lo agotador que puede ser y ni mencionar lo torpe y descoordinado que uno puede sentirse. “Requieren tener buen equilibrio”, dijo Funk. También es necesario tener fuerza en las extremidades superiores. “Las personas terminan muy adoloridas en la parte superior del cuerpo porque no están acostumbradas a cargar todo el peso del cuerpo en los brazos”. Si de por sí tiene limitaciones de movimiento en las articulaciones, puede ser difícil usar muletas. Por eso es importante usarlas de manera correcta y tomar descansos según sea necesario.

Si pide prestadas un par de muletas de un amigo o las alquila en la farmacia, ajústelas a su tamaño. Estando de pie sobre un piso parejo, la parte superior de las muletas debe llegar a 1-2 pulgadas debajo de las axilas. Debe poder colocar dos dedos en el espacio que queda. Con los brazos a los costados, las manillas deben estar a la altura de las muñecas. Pero al usar las muletas lo más importante es apoyar el peso en las manos, no las axilas. De lo contrario, puede causar daño a los nervios y vasos sanguíneos de las axilas. 

Los codos deben quedar ligeramente doblados cuando agarre las muletas. “Lo ideal es tener un poco de flexión en el codo, 5 a 10 grados como máximo”, aseguró Funk. De esa manera, cuando presione hacia abajo sobre las manillas de las muleta, puede estirar los codos, agregó. Si los codos no se le extienden del todo, su fisioterapeuta puede modificar sus muletas o andador para ofrecerle una plataforma en la cual apoyar el antebrazo, aseguró Funk. “Esto limita un poco del esfuerzo de los codos”.

Ponerse en marcha con muletas requiere un poco de previsión. Inclínese un poco hacia adelante y coloque las puntas de las muletas aproximadamente 1 pie delante, formando así un trípode. Párese en el pie sano y balancee la pierna lesionada hacia adelante. Luego, lleve despacio el cuerpo hacia delante entre las muletas, seguido de la pierna sana. Las puntas de goma deben estar planas en el piso mientras realiza todo el movimiento.

Cuando tenga que descansar, encuentre una silla con reposabrazos. Retroceda hacia ella, hasta que sienta el borde de la silla contra las piernas. Extienda la pierna lesionada frente a usted y agarre ambas muletas con la mano de ese lado. Use la otra mano para tantear detrás suyo, en busca del reposabrazos. Luego vaya bajando lentamente hacia la silla, manteniendo doblada la pierna sana. Coloque las muletas en el piso, recostándolas sobre las manillas, no las puntas, para que no se resbalen ni caigan.

Para pararse, deslícese hacia el borde de la silla. Agarre ambas muletas con la mano de su lado sano. Luego empuje hacia abajo para pararse apoyándose en la pierna fuerte. Coordinar las muletas en las escaleras puede ser difícil, así que pregúntele a su fisioterapeuta si siquiera debe tratar de hacerlo. 

Aunque son menos comunes y más caras, las muletas canadienses (o de aros), que llegan hasta el antebrazo, pueden ser preferibles en ciertas ocasiones. “Si va a usar muletas por mucho tiempo, es más fácil entrar y salir de sitios con muletas canadienses”, aseguró Funk.

Estabilidad del andador

Los andadores ofrecen más estabilidad que los bastones o muletas. “Según la edad de la persona o cuánto le cuesta mantener el equilibrio, el andador es más estable”, indicó Funk. Quizá sea necesario un andador después de una cirugía para remplazo total de tobillo, rodilla o cadera. Dado que uno se impulsa con los brazos, el andador evita que la parte inferior del cuerpo aguante todo o parte del peso mientras camina. 

Asegúrese de que el andador sea de tamaño adecuado para usted. Párese erguido con los brazos a los costados. La parte superior del andador debe llegarle a la altura de las muñecas. Debe tener hombros un poco doblados cuando coja las manillas y la espalda recta, no encorvada. Revise las puntas de goma de las patas para asegurarse de que estén en buen estado.

Para caminar con un andador, colóquelo un paso por delante, con todas las patas firmemente plantadas en el piso. Aferre las manillas y lleve la pierna lesionada hacia delante, hasta el medio, pero no totalmente hasta el frente. Sosténgase sobre las manillas y mueva la pierna sana. Trate de dar pasos cortos y de voltear lentamente. Nunca use un andador en escaleras eléctricas en marcha ni para subir escaleras, advierte el Colegio de Cirujanos Ortopédicos de Estados Unidos (American Academy of Othopaedic Surgeons o AAOS).

Colocar bolas de tenis en las patas delanteras de un andador corriente lo convierte en un andador semirodante, señaló Funk. “Esto a veces permite que una persona mayor o con problemas de equilibrio lo controle más fácilmente”. El andador modificado se desliza con mayor facilidad, pero uno no pierde control de este tan fácilmente como con los rodantes, agregó.

Lo básico sobre los bastones

Para las personas con trastornos hemorrágicos, los bastones sirven como implementos de transición. Hay pacientes que están listos para prescindir de las muletas, el andador o la silla de ruedas. “Cuando comienzan a mejorar y quiero que soporten un poco de peso, hago que usen un bastón”, dijo Funk.

Los bastones han mejorado mucho desde la época del bailarín Fred Astaire. Las diversas formas y estilos se adecúan a diversas necesidades. El bastón con mango en forma de C o de gancho es el estilo clásico. “Es bueno para alguien que lo usa estrictamente para el equilibrio”, dijo Funk. El bastón offset o de apoyo funcional tiene un mango recto, que es fácil de sujetar. “Le permitirá empuñarlo con mayor firmeza si tiene problemas del codo o la muñeca”, indicó Funk. La Fundación de la Artritis (Arthritis Foundation) lo recomienda para las personas con artritis en las manos y muñecas. El bastón de cuatro patas ofrece más estabilidad y ayuda a mejorar el equilibrio. “Con hemofilia, lo podría usar alguien joven con un caso fuerte de enfermedad articular”, dijo Funk.

Se puede modificar el largo de los bastones, así que mida el suyo debidamente. La parte superior del bastón debe llegarle a la muñeca cuando esté parado con el brazo al costado. Al caminar con un bastón, debe doblar el codo en un ángulo de 15-20 grados. Según la AAOS, debe llevar el bastón del lado sano, un paso por delante. Luego dé un paso con la pierna lesionada, seguida por la fuerte. 

Quizá le parezca difícil subir el borde de la acera y las escaleras, pero si practica podrá sortearlos con confianza. “Suba con la sana, baje con la mala” es una manera fácil para recordar qué pierna usar primero. Suba las aceras o los escalones con la pierna sana y luego alce la lesionada y el bastón. Al descender, ponga el bastón abajo, en el escalón o el pavimento. Luego baje la pierna lesionada y después la pierna sana. Cuando use un bastón en las escaleras, siempre agárrese con la mano libre del pasamanos o la barandilla.

Andadores scooters

Parece que las patinetas no son solo para los niños. Con frecuencia se recomiendan los andadores scooters o de rodilla a pacientes que han tenido una operación del pie o una lesión de la parte inferior de la pierna, el tobillo o el pie. Por lo general tienen cuatro ruedas, un asiento acolchonado en que descansa la pierna lesionada y timones con agarraderas. Algunos modelos tienen una canasta para cargar cosas. Se empuja con la pierna fuerte, mientras que la pierna lesionada se desliza a su costado. Las scooters dejan las manos libres para hacer otras cosas.

Es importante seleccionar una de tamaño adecuado. Al pararse, la pierna sana debe estar recta, y la lesionada debe estar doblada, descansando cómodamente en el asiento acolchonado. “Debe estar a la altura correcta del fémur, y es necesario mantener la cadera nivelada”, indicó Funk. Asegúrese de cambiar no solo la altura del asiento sino también la del timón. Debe poder tomar el timón sin inclinarse.

Los andadores scooters o de rodillas tienen varias ventajas. Con ellos no es necesario hacer más esfuerzo con los hombros, brazos o manos. Además, no requieren el mismo nivel de coordinación que las muletas. Es más, ayudan en cierta medida a prevenir la atrofia muscular que provoca el uso de muletas. “Ayudan a preservar la fuerza muscular de las caderas mucho más, pues usted puede poner el peso sobre la cadera”, señaló Funk. Asimismo, la cadera y el tronco quedan más alineados, agregó. 

Al aire libre, los andadores scooters se pueden usar sin dificultad en el pavimento y las aceras; algunos también se deslizan con facilidad sobre el césped y la grava. Ya que es posible doblarlos, se pueden meter en un auto. Pero tienen limitaciones. No son adecuados para personas con problemas de la rodilla o la cadera, advirtió Funk. Pueden ser pesados, y no se deben usar en escaleras. Aparte, es más caro alquilarlos o comprarlos.

Trampolín a la motilidad

El tiempo que usted puede necesitar un implemento de apoyo para caminar va a depender del motivo. “Para que se fusione una fractura de tobillo, los pacientes no deberán soportar peso durante varios meses”, dijo Funk. Por otro lado, en el caso de hemorragias agudas, puede tomar uno o dos días. “Pero si esperan a que la hemorragia sea excesiva, podría tomar una semana o más”, dijo Funk. 

Considere los implementos para caminar como su trampolín a la motilidad. “Uno no debe dudar en usarlos cuando sea necesario”, recomendó Funk. Pero no lo haga por su cuenta; pida ayuda en su centro de tratamiento. “Cuanto más afectadas estén las articulaciones o el equilibrio, más cuidadoso debe ser con lo que usa y de que sea del tamaño adecuado”.

Tue, 03 May 2016

Honey roasted peanuts. Chocolate-dipped strawberries. Lobster thermidor. Your tantalizing treat may be someone else’s toxin. That’s because food allergies can trigger everything from hives to swelling of the throat and labored breathing.

If it seems that food allergies are on the rise, they are. Peanut allergies tripled in school children from 1997-2008, according to Food Allergy Research & Education (FARE). That means about 1 out of every 13 kids in every classroom has a food allergy. Further, 30,000 people are treated for food allergies in emergency rooms yearly. Approximately 150-200 Americans die annually of food allergy-related complications.

It pays to know which foods bring on your or your child’s allergic reactions, how to treat them and when to call 911.

Allergens and antibodies

Allergens are the causes of allergies. They are anything that your immune system considers foreign and causes it to mount an attack. To defend itself against this so-called “enemy,” your immune system produces immunoglobulin E (IgE), an antibody that attaches to cells on your skin and in your nose, throat, lungs and gastrointestinal tract. On the second encounter with the allergen, these cells produce histamines, proteins that flood the bloodstream, causing symptoms.

The problem with some people’s immune systems is that they are overly sensitive to the proteins in some foods, which they consider foreign invaders. Food allergy symptoms can occur suddenly or up to several hours later. They can start out mild, with a skin rash, itchy eyes and runny nose, and then become severe. Within minutes a person can experience:

  • Flushed or pale skin
  • Swollen face, lips, mouth, tongue or throat
  • Coughing, wheezing and difficulty breathing or swallowing
  • Diarrhea and vomiting
  • Weak, rapid pulse and low blood pressure
  • Dizziness, fainting, loss of consciousness or shock

These symptoms can be life threatening if the person stops breathing or the heart stops pumping.

Typical triggers

Although more than 160 foods can cause sensitivities, the US Food and Drug Administration (FDA) lists these eight groups as causing 90% of food allergies:

  • Peanuts
  • Tree nuts, such as almonds, Brazil nuts, cashews, hazelnuts, pecans, pistachios, walnuts
  • Milk
  • Eggs
  • Wheat
  • Soy
  • Fish, particularly bass, cod, flounder, halibut, salmon and tuna
  • Shellfish, especially the crustaceans crab, lobster and shrimp. Also mollusks, such as clams, mussels, oysters and scallops

Of these, milk and eggs are the top two allergens in kids. The American Academy of Allergy, Asthma & Immunology (AAAAI) says that children tend to outgrow these allergies and those to wheat and soy. However, shellfish allergies linger through adulthood. They can cause anaphylaxis, a life-threatening reaction that can lead to death.

Note that there is a distinction between a wheat allergy and celiac disease, a type of gluten intolerance. The former occurs when the immune system overreacts to a food protein, often causing hives. The latter is an autoimmune disease affecting the small intestines, causing malabsorption and chronic diarrhea.

Also be aware of food allergens not on the FDA list. Severe reactions have occurred from poppy, sesame and sunflower seeds, and to porcine gelatin, used as a stabilizer in vaccines.

Epinephrine to the rescue

If you have mild allergies, a dose of an antihistamine may do the trick. However, if you have severe allergies, your antidote can be as close as your pocket or purse. You should carry a hand-held device that auto-injects epinephrine, a type of adrenaline that reverses allergy symptoms. 

Mylan’s EpiPen® looks like a felt-tipped marker. Sanofi’s Auvi-Q™ is about the size of a small cell phone and talks you through the procedure. Both should be used right away, by jabbing them in your outer thigh for a few seconds to release the dose. Even if your symptoms disappear, you should head to the emergency room to be examined by a doctor. Then make an appointment with your allergist or immunologist, specialists who treats allergies.

Detection and prevention

In sports, they say the best defense is a good offense, and this adage applies to allergies as well. Learn to be a super sleuth when it comes to reading labels and interpreting ingredients. The FDA regulates food labeling, requiring manufacturers to list offending agents from the eight groups mentioned previously. For instance, a label on a bag of almonds will note: “Made on shared equipment and may contain: milk, peanuts, other tree nuts, wheat, soy and egg.” 

When eating out, request the ingredients list not only for the foods you’re craving, but also for accompanying condiments, gravies, salad dressings, seasonings, sauces or toppings. Remember, that cooking foods doesn’t render them safe. Even vapors in the kitchen or a small amount of the allergen-producing food left on a cooking utensil or food processing machine can cause allergic reactions, says the AAAAI. 

Also, wear a MedicAlert® bracelet or other tag on your body identifying your food allergies. That will come in handy for medical personnel who may need to treat you.

Allergy testing

Your allergist may recommend a skin prick test to confirm the presence of IgE antibodies. During the procedure, a small plastic probe or needle scratches the skin on your arm or back, sending a tiny amount of the solution just under the surface of your skin. A raised white bump surrounded by red, itchy skin, called a wheal, indicates a positive reaction.

On the plus side, the test is inexpensive, provides results within 30 minutes, is not painful and doesn’t cause bleeding. However, it has a high rate of false positives—up to 60%—indicating you have a food allergy when you really don’t. 

If you have severe eczema, a blood test may be substituted for the skin test. It also shows the presence of IgE antibodies. However, because of its high false negative rate—50%-60%—the AAAAI doesn’t generally recommend it.

The oral food challenge is considered diagnostic, though. At your allergist’s office, you eat small portions of the suspected foods, and are observed for symptoms. Lastly, a food elimination diet for 2-4 weeks can show the absence of symptoms when suspected foods are avoided.

Staying alert regarding your or your child’s food allergies may feel like a full-time job. But the vigilance you use now could literally save a life later.

Tue, 26 Apr 2016

TV can sometimes be your tutor, especially if you follow reruns of FOX TV’s popular medical drama, “House.” Dr. Gregory House, the title character played by Hugh Laurie, uses a cane, but the wrong way. Instead of putting it in the hand on his good side, he uses it on his bad side. Sometimes there’s a reason for that. “We may have to break the traditional rules and do what’s best to mobilize the patient,” says Sharon Funk, PT, DPT, University of Colorado Denver Hemophilia and Thrombosis Center.  “If you have a bad elbow or shoulder, you may not be able to use a cane on that side.”

Although life sometimes imitates art, when it comes to using a walking aid, such as crutches, a walker or a cane, your best bet to is seek the expert staff at your hemophilia treatment center (HTC). They can literally walk you through the proper procedure. It’s good to know when a walking aid is called for and how to use it.

Walking aids 101

Walking aids serve a variety of purposes, helping you get around after surgery and when dealing with a joint bleed. They provide stability and balance when your endurance and coordination are compromised. Further, they decrease the stress on a painful joint or limb. They also help you safely navigate your home, school or workplace.

Follow a few rules of thumb when using a walking aid. Wear shoes with rubber or nonskid soles, and avoid heels. Look straight ahead of you, not at your feet. Eliminate potential tripping or slipping hazards in your home or workplace, such as throw rugs, dangling cords and spilled food or drinks. Don’t use your staircases to stow boxes, laundry or other items that could get in your way.

If you’re ambulating with crutches or a walker, don’t wedge items in your hands or under your armpits. Instead, try using a small backpack or fanny pack. Lastly, replace worn or cracked rubber tips on the bottom of your cane, crutches or walker legs. If you live in a cold climate, winterize your walking aid with ice tips, which you can purchase at your local drugstore.

Crutch know-how

Crutches are called for after some types of limb and joint surgeries, and if you can’t bear weight on your foot or leg. But watching a teenager whip around the mall on crutches may give you a false sense of security. Any adult who has tried crutches knows just how exhausting they can be. Not to mention how awkward and clumsy they make you feel. “They require good balance,” says Funk. They also require upper limb strength. “People get very sore in their upper bodies because they’re not used to bearing their whole body weight on their arms.” If you already have decreased range of motion in your joints, using crutches can be tough. That’s why it’s important to use them the right way and take breaks as needed.

If you borrow a set of crutches from a friend or rent them from your pharmacy, adjust them for your body size. While standing on level ground, the top of the crutches should hit about 1-2 inches below your armpit. You should be able to place two finger widths in the space. With your arms at your sides, the hand grips should be even with the crease in your wrists. Here’s the clincher: rest your weight on your hands, not your armpits, when crutching. Otherwise, you could damage nerves and blood vessels in your armpits.

Your elbows should be slightly bent when you hold them. “You want to have a little bit of flexion in the elbow, 5 to 10 degrees max,” says Funk. That way when you push down on the crutch hand grips, you can extend your elbow, she adds. If you have limited elbow extension, your PT can modify your crutches or walker to provide a platform to rest your forearm, Funk says. “This takes some of the stress off the elbow.”

Getting a move on with crutches take a little forethought. Lean slightly forward and place the tips of the crutches about 1 foot in front of you, forming a tripod. Stand on your good foot and swing your injured leg forward. Then bring your body forward slowly between the crutches, with your good leg following through. The rubber tips should be flat on the ground as you move through the motion.

When you need to rest, find a chair with arms. Back up to it, until you feel the edge of the chair against the back of your legs. Extend your injured leg out in front of you and place both crutches in the hand on that side. Use the other hand to feel behind you for the chair’s arm rest. Then lower your body slowly into the chair, keeping your good leg bent. Place the crutches on the floor, leaning them on the handles, not the tips, so they don’t slide or fall down.

To stand up, scooch to the front of the chair. Put both crutches in the hand on your good side. Then push up and stand on your good leg. Coordinating crutches on stairs can be tricky, so ask your physical therapist if you should even attempt them.

Although less common and more expensive, Canadian crutches, which come up to the forearms, may be preferable at times. “If you’re going to have to be on crutches for a really long time, Canadian crutches are easier to get in and out of places,” Funk says.

Walker stability

Walkers offer more stability than do canes or crutches. “Depending on the person’s age or how bad their balance might be, the walker is more stable,” says Funk. A walker might be needed after total ankle, knee or hip replacement surgery. By propelling yourself with your arms, the walker keeps some or all of the weight off your lower body as you walk.

Make sure your walker fits you. While standing straight with your arms at your sides, the top of the walker should reach the crease of your wrists. Your elbows should be slightly bent when grasping the handgrips, and your back should be straight, not hunched. Inspect the legs’ rubber tips to make sure they’re in good working condition.

To ambulate with a walker, place it one step ahead of you, with all four legs firmly on the ground. Hold the handgrips and move your injured leg into the middle area, but don’t step all the way to the front. Push down on the handgrips and move your good leg. Try to take small steps and turn slowly. Never use a walker on a moving escalator or while climbing stairs, warns AAOS.

Placing tennis balls on the front legs of a standard walker turns it into a semi-rolling walker, says Funk. “This sometimes allows for easier control by an older person or someone with balance issues.” The modified walker slides more easily, but doesn’t get out of control as easily as a rolling walker, she adds.

Cane basics

For people with bleeding disorders, canes are transition walking aids. They’re for patients who are ready to graduate from crutches, a walker or wheelchair. “As they’re getting better and I want them to bear some weight, I’ll have them use a cane,” says Funk.

Canes have come a long way since Fred Astaire’s tap dancing days. Several shapes and styles meet different needs. The C, or crook, cane is the classic style. “It’s fine for someone who’s strictly using it for balance,” says Funk. The offset, or functional support, cane has a straight handle, which is easy to hold. “It is going to give you a better grip if you have a somewhat challenged elbow or wrist,” Funk says. The Arthritis Foundation recommends it for those with arthritis in their hands and wrists. The quad cane has four prongs on the bottom, providing stability and helping improve balance. “With hemophilia, it could be used by someone who is young who has a lot of joint disease,” says Funk.

Cane heights can be adjusted, so measure yours properly. With your arm hanging at your side, the top of the cane should reach the crease in your wrist. When walking with a cane, your elbow should be bent at a 15-20 degree angle. According to the American Academy of Othopaedic Surgeons (AAOS), place the cane on your good side one stride ahead of you. Then step off on your injured leg, followed by your good leg.

Curbs and stairs may look like a challenge, but with practice, you can manage them confidently. “Up with the good, down with the bad” is an easy way to remember which leg goes first. Step up on the curb or stair with your good leg, then bring your injured leg and the cane up next. When going down, move the cane down to the stair or street below you. Then step down with the injured leg and bring your good leg down last. Always grasp the banister or railing with your free hand when using a cane on stairs.

Knee scooters

Turns out, scooters are not just for kids. Knee scooters, or knee walkers, are often recommended for patients after foot surgery or injury to the lower leg, ankle or foot. Typically, they have four wheels, a padded seat where you rest your injured leg and handles with grips. Some models have a basket for carrying things. With your good leg, you push off, while your bad leg glides along next to you. Scooters leave your hands free to do other things.

Getting a proper fit is important. While standing, your good leg should be straight and your injured leg should be bent, resting comfortably on the cushioned seat. “It has to be at the right height for that person’s femur and you want to keep the hips level,” Funk says. Make sure to adjust not only the seat height but also the handles. You should be able to grip the handles without leaning.

A knee scooter has several advantages. It won’t tax your shoulders, arms or hands. And it doesn’t require the kind of coordination you need to master crutches. Further, it helps prevent some of the muscle atrophy that occurs on crutches. “It’s going to keep your muscle strength up in your hip much better because you can shift your weight over the hip,” says Funk. Plus, the hip and trunk are in better alignment, she adds.

Outside, knee scooters work well on pavement and sidewalks; some also move smoothly on grass and gravel. They fold up, so you can pop them in the car. But they do have limitations. They’re not for people who with hip and/or knee problems, cautions Funk. They can be heavy to carry and should not be used on stairs. Further, they are more expensive to rent or buy.

Mobility stepping stones

How long you’ll need a walking aid depends on the cause. “For ankle fusion, patients will be non-weight bearing for up to several months,” Funk says. For an acute bleed, though, it could be only a day or two. “But if they wait until it’s a really bad bleed it could be a week or more,” says Funk.

Think of a walking aid as your stepping stone to mobility. “People should not hesitate to use them when they need them,” Funk says. But don’t go it alone, ask your HTC for help. “The more involved your joints or your balance, the more careful you’ll have to be about what you use and that it’s fitted properly.”

Wed, 20 Apr 2016

In each issue, we spotlight a member of the bleeding disorders community. Here, we spotlight Matti Vann, the woman behind HemosUnite, a podcast for and about people with hemophilia.

Describe the HemosUnite podcast. 

HemosUnite is a monthly podcast, where I interview people in the bleeding disorders community and ask them to share their stories. I talk to people from all different walks of life who are involved in the community in different ways, so it covers a variety of stories.

How did you first get started doing the podcast?

I was speaking at an event at ­Children’s Hospital Los Angeles, where my son is treated, on a panel that was moderated by Patrick James Lynch. While I was speaking, I mentioned that I was thinking about starting a podcast for people with hemophilia. I could see from the stage the crowd move in and lean forward. There was obviously an interest in this. I looked at my husband and said, “Well, we’re working late tonight.” We set up a website and started the podcast that night.

What did you want to accomplish through it?

I want to find people who have stories to tell and hope to give. I’m a member of a couple of different bleeding disorders Facebook groups. I sent messages to some of the people I had become friends with on those groups and told them I was starting a podcast and I would love to hear their story. I reached out to several bloggers in the community for Season One. Nearly everyone I contacted said yes. Really, I am blown away with how generous people are with their time. 

Why a podcast?

I drive a lot, especially when I was living in Los Angeles, and podcasts are great if you have to live in your car the way we sometimes do. Also, I think podcasts are a great medium for sharing information. You get so much insight from listening to somebody speak about what they’re going through. You can pick out specific insights, and then hopefully pay the ideas forward. There’s no barrier to entry and it’s easy to learn to do yourself.

What equipment do you use?

I use a blue microphone, Audacity to do my editing and Skype. It cost me under $100. It’s not a huge financial investment if you want to create your own podcast.

What’s been your experience in the bleeding disorders community?

Like a lot of people, when my son was first diagnosed with hemophilia it was crushing. My husband and I were terrified. But the reason we were scared was because we didn’t know anything. Once I started educating myself, I realized he was going to be okay. He’s going to have a normal life. Going through that really inspired me to advocate not just for myself, but for other people who are going through the same thing. Hemophilia has really been a blessing, in a way, because I think it’s made me a better person.

Do you know an interesting individual who would like to be profiled in HemAware? E-mail: libby.hawkins@manifest.com.

Wed, 20 Apr 2016

The scene at Washington Days, the National Hemophilia Foundation’s (NHF) annual advocacy event, is characterized by a sense of excitement and exhilaration. Volunteer advocates from the bleeding disorders community convene on Capitol Hill to meet with their legislators to discuss issues relating to the bleeding disorders community. 

But this year, something was a little different: everyone was seeing red. Advocates got creative in wearing red ties as a symbol of solidarity.

The red ties were to promote an awareness campaign for the newly designated Bleeding Disorders Awareness Month. NHF worked with the US Department of Health and Human Services to have March officially listed as Bleeding Disorders Awareness Month. This year marks the 30th anniversary of President Ronald Reagan’s designation of March 1986 as Hemophilia Awareness Month. The decision to work to recognize March as Bleeding Disorders Awareness Month was based on a desire to more accurately reflect the wider bleeding disorders community. 

The approximately 350 volunteer advocates who came to Washington, DC, on Feb. 24–26 were briefed on three issues they would be discussing with their legislators. The first was recognition of Bleeding Disorders Awareness Month by the representative. The official was asked to make a one-minute floor speech in recognition of the month, or post a photo and a statement of support on social media channels while wearing a red tie and using the hashtag #Red

TieChallenge. The second was keeping federal funding stable for federal hemophilia programs. The last was a request to co-sign H.R. 3742, the Access to ­Marketplace Insurance Act, which would prevent marketplace insurance plans from not accepting premium assistance from third party, nonprofit patient assistance programs. The bill was introduced by Representative Kevin Cramer (R-ND). Currently, there is no ­companion bill in the Senate.

Two training sessions were held for the volunteer advocates: a Washington Days training, which covered all three issues in detail, and a social media training for attendees. Because part of the request was for support for the Red Tie Challenge on social media, attendees were given their legislators’ Twitter and Instagram handles ahead of time. They were encouraged to engage with their representatives via those social media platforms.

As a result of the meetings, four representatives co-signed H.R. 3742. Approximately 24 legislators posted statements of support for the first Bleeding Disorders Awareness Month via their social media channels. Representatives Dan Benishek (R-MI), Billy Long (R-MD) and John Carney (D-RI) gave a one-minute floor speeches to the House of ­Representatives in recognition of the month. Representative David Scott (R-GA) also submitted a floor speech on March 3 in support of the month.

“This is the first time we’ve had an awareness campaign as part of our advocacy effort in Washington DC,” says Michelle Rice, NHF VP for public policy and stakeholder relations. “Our advocates were able to start the meetings with an easy and fun ask: wear this tie in support of Bleeding Disorders Awareness Month. We’re happy we got such a great response from lawmakers as a result of those meetings.”

For more information on NHF’s Red Tie Challenge: www.redtiechallenge.org.

(Left to right) Samuel Cavas and his mom Barbara Gordon meet with Senator Sheldon Whitehouse (D-RI), who proudly shows off his red tie.
Kristi Harvey Simi (middle), NHF Manager of Chapter Development, and Bob Goodley of Oklahoma meet with a legislative aide from Senator James Inhofe’s (R-OK) office.
Lisa Maxwell gives a hearty handshake to Senator Jon Tester (D-MT) after her meeting.
Senator Chuck Schumer (D-NY) enjoys chatting with a couple of young volunteer advocates from New York.
NHF CEO Val D. Bias supports Cole Hamstead and his mother, Kim, as they present the Dr. L. Michael Kuhn Award to Senator Chris Coons (D-DE), which was accepted by legislative aide Kelsey Mellette.
Washington Days participants congregate outside the Russell Senate building before meeting their representatives.
Members of the Arizona coalition are all smiles meeting Representative Ruben Gallego (AZ-7). Rep Gallego spoke to attendees about the impact citizen advocacy can have on members of Congress.

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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