The Official Newsletter of the Florida Hemophilia Association

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eld on June 1, 2013 at the Art Institute of Fort Lauderdale, the Lighten Up

program brought together communitymembers for a fun afternoon of cooking,learning and best of all, eating! The daystarted off with a talk by Dr. Joanna Davisfrom the University of Miami HTC andSheah Rarback, Director of Nutrition at theMiller School of Medicine. Sheah gave the

group great tips on healthy eating and howeasy it can be to integrate healthier foods intodaily life. Dr. Davis then discussed whymaintaining healthy eating habits and anactive lifestyle is very important to bleedingdisorder patients. Carrying extra weight canplace a heavy strain and cause damage tojoints when a patient has a bleed.

H

Lighten Up Program

Continue Pg. 2

Maintaining healthyeating habits and anactive lifestyle is veryimportant to bleedingdisorder patients.

Dr. Joanna Davis

Executively SpeakingPage 2

Community CornerPage 3 - 4

NHF NewsPage 7 - 8

FHA Resource CenterPage 11

SUMMER 2013

INSIDE

30th Annual Family EducationSymposiumSeptember 6-8

Amigos Dinner-MiamiSeptember 15

NHF Annual MeetingOctober 3-5

Educational Program-Ft. LauderdaleOctober 22

24th Annual Swing for the Kids Golf TournamentDecember 9

Holiday Family Fun DayDecember 15

HFA SymposiumMarch 27-29, 2014

4th Annual Walk in the JungleMay 3, 2014

“SAVE THE DATE”

ExecutivelySpeakingIt’s been a busy time for us here at theFlorida Hemophilia Association espe-cially with the planning of our 30th

Annual Family Education Symposiumscheduled for September 6 - 8 at theEmbassy Suites in WPB. We’ve got aterrific line-up of fun, education andnetworking opportunities for the entirefamily that’s surely not too be missed.We also just hosted the last of our

three scheduled “Swim with Dolphins” outings in Key Largo.Participants learned about marine life and even got to see andhold some very rare creatures like the endangered “QueenConch” and sea urchins. You can see the photos of the dolphinday and all of FHA outings in the Photo Gallery on our webpage.

We’ve got a myriad of things up our sleeves for you in the com-ing months! You’ll want to make sure to open all of the emailsfrom us and also check out our website at www.floridahe-mophilia.org for new programming, upcoming educational din-ners, holiday fun, fund-raising events and a whole lot more!

And finally a special request to all of you to help out your chapter(FHA) by volunteering, fund-raising and or joining one of ourcommittees. With your help we can continue to provide somegreat programs and outings for all of you to enjoy.

I look forward to seeing you soon!

Debbi AdamkinFHA Executive Director

MensajeEjecutivoHemos estado muy ocupados en la Asociación de Hemofilia deFlorida, especialmente en la planificación de nuestro 30er.Symposium Anual de Educación a la Familia , a llevarse a cabo del 6al 8 de setiembre en el Embassy Suites de WPB. Tendremos granvariedad de cosas divertidas por hacer, así como también activida-des educativas y grupales para toda la familia que estamos segurosno se perderán. También acabamos de auspiciar la última de lastres actividades programadas “Swim with Dolphins” (Nadando conlos Delfines) en Key Largo. Los participantes aprendieron sobre lavida marina y hasta pudieron ver y tocar algunas especies en peli-gro de extinción como la “Queen Conch” (Concha Reina) y erizosde mar. Pueden ver las fotos de la actividad del día de los delfines yde otras actividades de la FHA en la Galería de Fotos de nuestrapágina web.

Tenemos infinidad de cosas que ofrecerles en los próximos meses!Asegúrense de abrir todos los emails que les enviamos y tambiénchequear nuestro website www.floridahemophilia.org para estaral tanto de la nueva programación, de las próximas cenas educati-vas, de las diversiones programadas para los feriados (holidays),de los eventos para recaudar fondos y muchísimo más!

Para concluir, quisiera pedirles a todos ustedes un favor especial:que apoyen a su capítulo (FHA) ya sea como voluntarios, en larecaudación de fondos y/o formando parte de uno de nuestroscomités. Con su ayuda podremos seguir brindándoles los excelen-tes programas y actividades especialmente diseñados para eldeleite de todos y cada uno de ustedes.

Ansiando verlos muy pronto!

Debbi AdamkinDirectora Ejecutiva de FHA

2 SUMMER 2013 • LIFELINE

Lighten Up Program Continued ...After the discussion, the group made their way into the kitchen

to cook with culinary instructors and students. The recipesprepared were submitted prior to the event to be “lightened up”by the chefs. Some of the dishes prepared included: oven-friedchicken, macaroni-and-cheese, mofongo, braised collard greens andpecan pie.

We would also like to thank the culinary instructors and studentsof the Art Institute of Fort Lauderdale for their timeand teaching us how to cook a delicious and light meal!

This program was made possible through a grantfrom the Hemophilia Alliance Foundation. We’d alsolike to acknowledge Grifols for being a ProgramSponsor.

3SUMMER 2013 • LIFELINE

Mother's Educational Focus LuncheonSubmitted by Amy Hook

On May 18, 2013, my mother and I attended the Mother’sEducational Focus Luncheon at Brio Tuscan Grille in GulfstreamPark. I just wanted to let you know how much my mother and Iappreciated the luncheon. It was the second time we attended.The other mothers that were there were really nice. Theatmosphere was so laid back and relaxing. We all shared our

stories and I truly felt we wereable to connect with each other.Although I would never wishhemophilia on anyone, it was socomforting to know that we arenot alone. When I told myhusband what an enlighteningexperience I had, he gotjealous. He wants to knowwhen the Father’s Luncheonwill be! I look forward to nextyear’s luncheon.

This program was made possible through grants provided by: Baxter, Bayer and Kedrion Biopharma

4 SUMMER 2013 • LIFELINE

Submitted byAyden

I had an amazingtime at dolphin campthis year. This was mythird year going toIsland Dolphin Care.This year was very special because Squirt had a

baby dolphin. His name is Tashi and he was born in August of

last year. I was lucky enough to be able to swim with Squirt and

baby Tashi. Tashi is amazing he is less than a year old and he can

already do all kinds of tricks (if he’s in the mood�). IDC has so many

cool things to see. They had a new animal in the touch tank named

Squishy. He is a very weird animal called a sea hare which is a

type of mollusk. He was very squishy!! I also had a chance to kiss

the sea cucumber for good luck. The food was awesome. I had a

cheeseburger and it was delicious. My favorite part of the day was

being able to go swimming with the dolphins. It was so much fun.

It made me so happy to be able to swim with Squirt and Tashi. The

best part was when I got to kiss and hug Squirt. I had so much fun

at dolphin camp this year. Thank you FHA and Island Dolphin Care.

Submitted by Omar "I had a very great experience in Key Largo on Friday, August

2nd. This was the first time I swam with dolphins. I swam withthree dolphins named BB, Figi, and Ding . At first, I was a bitnervous but the instructors kept telling me that the dolphins werevery friendly and that I was going to have the best experience.My instructors were extremely nice in guiding me on how to andhow not to place my hands oneach dolphin. The best partwas when I was up and closeand kissed the dolphin. It was great to learnabout facts about fish anddolphins which aremammals. I actually kissedthe sea cucumber , 7 yearsof good luck. Muah!!!! Lol I also enjoyed

painting on my shirt and enjoyingmy day with my mom and cousins. Thanks FHA."

Submitted by Genesis

On July 12th, I visited for the very first time Island DolphinCare in Key Largo. The Island Dolphin care staff was so caring,friendly and patient towards us. Kim told us about a lot ofinvertebrates like the sea urchins, starfish etc. The food wasgreat. After we ate, Eli taughtus about the dolphins andthen we swam with them! Thisexperience was just amazing.The dolphins were so friendlyand I felt like I was in thedolphin show at Seaworld! Itwas just awesome and I wantto thank the FL HemophiliaAssociation and IslandDolphin Care for allowing meto experience this.

Submitted by Jennifer

My name is Jennifer and I have two brothers with

hemophilia. Seeing what my brothers go through on a daily

basis is very inspiring to me. I can’t imagine how difficult it is for

them. But they don’t let hemophilia take over their l

ife. They’re

aware of the risks and have to be careful. Thanks

to Debbi and

all her friends, my family and I have gotten to experience so

many wonderful things like swimming with dolphins. It was an

unforgettable day! We got to swim

with Bella and Bob. It was beyond

amazing for all of us! Every time

we go to the Family Education

Symposium, we learn a lot about

hemophilia and have fun at the

same time. Thank you to everyone

who has made this possible.

Submitted by Sharella Flowers

The kids had a wonderful experience at Island Dolphin Care. They enjoyed

the touch tank and learning about the vertebrate and invertebrate animals that

live in the ocean. The kids especially loved begin able to interact with the

dolphins in the water. At the end of the day they asked if they could come back

tomorrow and do it all again. We hope we have the opportunity to participate in

this adventure again in the future.

SW I MM I N G W I T H T H E D O L P H I N S

This program was made possible through grants provided by: Bayer and Grifols.

5SUMMER 2013 • LIFELINE

To view more pictures of “Swimming with the Dolphins”, visit us at www.floridahemophilia.org

Preparing Your Daughter for Her First Period By Leslie Quander Wooldridge

ichigan attorney Mindy Buurma, 36, is the mother of four hildren under age 10. She has type III von Willebrand disease (VWD), and her two

daughters (ages 5 and 3) have type I. She plans to tell her daughters aboutmenstruation when they are 8 or 9. “I want to make sure the information is comingfrom us and the doctors rather than from school or other children,” she says.

Buurma has the right approach, say experts. Although girls can start their periodsat 8 years old, the American College of Obstetricians and Gynecology (ACOG) says90% experience their first period, or menarche, between 12 and 14. For youngwomen with bleeding disorders, their menstrual flows can be especially heavy, longand painful, a condition called menorrhagia. Typically, their periods continue longerthan seven days—the top range of what is considered normal.

Impending menstruation can cause nervousness in young women. Girls andteens worry the blood will leak, staining their clothes, says Danna Merritt, MSW,LMSW, a social worker at the hemophilia treatment center at the Children’s Hospitalof Michigan in Detroit. That’s why it’s important to prepare young women early on.They need to know what to expect and what to do if they later have a heavy flow,severe cramps or other complications.Starting the Discussion

Mothers should have ongoing discussions about puberty and bodily changes withtheir daughters. They should avoid one long talk, says Lisa Perriera, MD, MPH,assistant professor of obstetrics and gynecology at University Hospitals in Cleveland,who treats young women with bleeding disorders. Experts suggest having the talkwhen your daughter is 8–12 years old. The initial discussion should cover whatmenstruation is, what happens in the body, what products to use and how to handlecramps, moods and fatigue. Chances are your daughter may already have had aprevious discussion in her physical education or health class at school. And sometampon and pad manufacturers sell first-period kits for mothers to use when they“have the talk” with their daughters.

Parents should answer all questions truthfully, says Perriera. Because youngwomen can be shy or embarrassed to talk about their bodies around their parents,they should be encouraged to talk to their gynecologist or primary care physicianprivately. Merritt notes that doctors, nurses and social workers at your hemophiliatreatment center also can talk to girls about menstruation and guide parents on whatto say at home.

Complications and TreatmentsUnlike Buurma’s older sisters, who have type I VWD—the most common and

the mildest type—she has the most severe type. “We all knew that it would be aproblem when I started menstruating,” she says. “I bled for about two monthsstraight and was hospitalized for about three and a half weeks.”

Knowing what’s normal or out of the ordinary is important for a young womanwith a bleeding disorder during her first few menstrual cycles. “It’s not normal to besoaking a pad in an hour,” Perriera says. Other complications that require aphysician’s attention include severe cramps that interfere with school or activities,and bleeding between periods.

To reduce heavy bleeding, hormonal medications may be needed. Buthormonal medications are also prescribed as birth control for sexually activewomen, which can sometimes present religious, cultural and other concerns forparents. When she was younger, Buurma’s doctors prescribed “the pill” ascontinuous hormonal medication to relieve her symptoms. “We are Catholic. In ourreligion, birth control is not an acceptable practice,” she explains. But her parentsmade it clear that taking the pills wasn’t against church doctrine because she was notusing them to prevent pregnancy. Other hormonal options include certainintrauterine devices (IUDs) or hormonal implants.

“I wish hormonal medicines weren’t marketed as birth control. They are periodcontrol. They are bleeding control,” says Perriera. Still, she realizes some parentshave concerns and may request nonhormonal treatments first. That’s whenhematologists can help.

Because each girl with a bleeding disorder experiences a different degree ofseverity with menstrual bleeding, it may be wise to meet with her hematologist todiscuss treatments. “For example, women with von Willebrand disease can beprescribed a hormone called DDAVP in the form of a nasal spray during menses todecrease the flow of bleeding,” says Sanjay Ahuja, MD, MS, a pediatrichematologist and oncologist who works with Perriera. “Women with type III vonWillebrand disease may need von Willebrand factor replacement during menses.”Further, physicians will also combine hormonal and nonhormonal medications inpatients with severe bleeding, he says.

No young woman should suffer in silence. “I think the messages ‘you’re goingto be OK’ and ‘we will deal with any issues together’ are huge,” Merritt adds.

Source: HemAware-April 2013

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7SUMMER 2013 • LIFELINE

NHF News • August 2013

Mindy Buurma, abogada de 36 años de Michigan, es la madre de cuatro niños menores de 10 años. Ella padece de la enfermedad de von

Willebrand (VWD) de tipo III y sus dos hijas (de 5 y 3 años de edad) padecen deltipo I. Ella piensa explicarles a sus hijas lo que es la menstruación cuando tenganalrededor de 8 o 9 años. “Quiero asegurarme de que reciban la información denosotros y de los médicos en lugar de hacerlo en la escuela o de parte de otrosniños”, dice ella.

La Sra. Buurma lo está enfocando de la manera correcta, dicen los expertos.Aunque las niñas pueden empezar con sus menstruaciones a los 8 años de edad,el Colegio Estadounidense de Obstetricia y Ginecología (ACOG, por sus siglasen inglés) indica que el 90% de ellas tiene su primera menstruación, o menarquia,entre los 12 y los 14 años. Para las jovencitas que padecen de trastornoshemorrágicos, sus flujos menstruales pueden ser especialmente abundantes,prolongados y dolorosos, lo que se conoce como menorragia. Típicamente, susmenstruaciones duran más de siete días, que es el límite superior de lo que seconsidera normal.

La inminente llegada de la menstruación puede producir nerviosismo en lasjóvenes. Las niñas y las adolescentes se preocupan de que la sangre se vaya apasar y les manche la ropa, comenta Danna Merritt, MSW, LMSW, unatrabajadora social del centro para el tratamiento de la hemofilia en el HospitalInfantil de Michigan en Detroit. Por eso es importante preparar a las jóvenes contiempo. Ellas necesitan saber qué esperar y qué hacer si más adelante tienen unflujo abundante, cólicos intensos u otras complicaciones.

Cómo empezar la conversación Las madres deberían conversar frecuentemente con sus hijas acerca de la

pubertad y de los cambios corporales. Deberían evitar una sola conversaciónprolongada, dice la Dra. Lisa Perriera, MPH, profesora agregada de obstetriciay ginecología en University Hospitals en Cleveland, quien trata a jóvenes contrastornos hemorrágicos. Los expertos sugieren hablar con su hija cuando tengaentre 8 y 12 años de edad. La conversación inicial debe tratar sobre lo qué es lamenstruación, qué ocurre en el organismo, qué productos usar y cómo manejarlos cólicos, los cambios de humor y la fatiga. Lo más posible es que ya su hijahaya hablado anteriormente sobre esto en la clase de educación física o de saluden la escuela. Algunos fabricantes de tampones y toallas sanitarias venden kitspara la primera menstruación para que las madres los usen cuando tengan “esaconversación” con sus hijas.

Los padres deben contestar todas las preguntas con sinceridad, dice la Dra.Perriera. Se debe animar a las jovencitas a hablar en privado con su ginecólogoo médico de cabecera ya que pueden tener timidez o sentir vergüenza de hablarsobre sus cuerpos en frente de sus padres. La Sra. Merritt indica que losmédicos, enfermeras y trabajadores sociales en su centro para el tratamiento dela hemofilia también pueden hablar con las niñas sobre la menstruación yorientar a los padres sobre lo que tienen que decir en casa. Complicaciones y tratamientos

A diferencia de las hermanas mayores de la Sra. Buurma, quienes padecendel tipo I de la VWD (el tipo más frecuente y leve), ella padece el tipo más

Cómo preparar a su hija para su primera menstruación By Leslie Quander Wooldridge

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8 SUMMER 2013 • LIFELINE

NHF News • August 2013

Experimental Hemophilia B Gene Therapy Tricks the Immune System

n July, researchers at The Children’s Hospital of Philadelphia (CHOP) published the results of a study in which they used bioengineered decoys as

a ruse to foil the immune system. This allowed for the successful delivery of genetherapy in mice with hemophilia B, or FIX deficiency. The lead author of thestudy was Katherine High, MD, director of CHOP’s Center for Cellular andMolecular Therapeutics.

High and her team used capsids, the protein shell that encapsulates a virus, asthe decoy. They also used adeno-associated viruses (AAVs) as delivery vehicles, orvectors, to carry the actual genetic material that triggers the production of factorIX. AAVs have recently become the “vector of choice” for researchers becausethey can deliver the genetic material into living cells to sustain therapeutic effectwithout causing disease. In addition, they can be targeted to liver cells, whichmanufacture FIX.

However, one drawback in using injected AAVs is the body’s natural immuneresponse. In some cases, antibodies are released, neutralizing the AAVs. Toremedy that, investigators injected both empty capsids and genetically alteredAAVs into the mice. The empty capsids effectively drew antibodies to them andaway from the gene therapy.

“This decoy strategy could be individualized to patients and could greatlyexpand the population of patients who may benefit from gene therapy,” said High.“Right now, 30 to 60 percent of adult patients develop antibodies that block theability of an intravenously infused vector to reach the target cells in the liver. Thisapproach holds the promise of overcoming this roadblock--pre-existingantibodies--and allowing successful intravenous gene therapy in virtually all adultpatients.”

This technique also proved effective in follow-up studies performed in rhesusmacaque monkeys. The therapy initiated higher levels of factor IX production, with noadverse events reported. Although additional studies, including clinical trials inhumans, will be necessary before such a therapy becomes a reality, the authors areencouraged by these preliminary findings.

“Our results, which held up over a range of doses, suggest that in clinicalstudies, it will be feasible to adjust the ratio of empty capsids to gene vector doses,depending on an individual's pre-existing level of neutralizing antibodies. Thatmeans we could personalize gene therapy to make it more efficient for eachpatient,” concluded High. “This work should make it possible to bring effectivegene therapy to most adults with severe hemophilia B. Each patient would receivea personalized final formulation that contains just the right amount of emptycapsid to neutralize any pre-existing antibody, and allow the gene-expressingvector to reach the liver.”

The study, “Overcoming Pre-existing Humoral Immunity to AAV UsingCapsid Decoys,” was published in the July 2013 online issue of ScienceTranslational Medicine.

Source: ScienceDaily, July 17, 2013

I

Terapia génica experimentalpara la hemofilia B “engañaal sistema inmunitario

n julio, los investigadores del The Children’s Hospital of Philadelphia (CHOP)publicaron los resultados de un estudio en el que usaron señuelos creados

mediante bioingeniería como una treta para desconcertar al sistema inmunitario. Esto permitióla distribución exitosa de la terapia génica en ratones con hemofilia B o con deficiencia delfactor IX. El autor principal del estudio fue la Dra. Katherine High, directora del Centropara Tratamientos Celulares y Moleculares del CHOP.

La Dra. High y su equipo utilizaron cápsides (la envoltura proteica que encapsula a unvirus) como señuelo. También usaron virus adenoasociados (AAV, por sus siglas en inglés)como vehículos transportadores, o vectores, para llevar el material genético que desencadenala producción de factor IX. Los AAV se han convertido recientemente en el “vector depreferencia” para los investigadores ya que estos pueden llevar el material genético dentro delas células vivas para mantener el efecto terapéutico sin producir enfermedad. Además, esposible dirigir a estos virus para que tengan como objetivo las células hepáticas, las cualesproducen el factor IX.

No obstante, un inconveniente al usar AAV inyectados es la respuesta inmunitarianatural del organismo. En algunos casos, se liberan anticuerpos que neutralizan los AAV.Para remediar esto, los investigadores les inyectaron a los ratones tanto cápsides vacías comoAAV alterados genéticamente. Las cápsides vacías atrajeron hacia ellas, de manera eficaz, losanticuerpos, alejándolos así de la terapia génica.

“Esta estrategia con señuelos podría individualizarse para cada paciente y podríaaumentar en gran manera la población de pacientes que pueden beneficiarse de la terapiagénica”, dijo la Dra. High. “En la actualidad, del 30% al 60% de los pacientes adultosproducen anticuerpos que bloquean la capacidad de un vector que se infunde por víaintravenosa de alcanzar las células que se tienen como objetivo en el hígado. Este enfoquepromete superar este obstáculo (los anticuerpos preexistentes) y permitir una terapia génicaintravenosa exitosa en prácticamente todos los pacientes adultos”.

Esta técnica también demostró ser eficaz en los estudios de seguimiento realizados enmonos macacos de la India. La terapia puso en marcha un aumento en la producción del factorIX, sin que se comunicaran eventos adversos. Aunque serán necesarios otros estudios, entreellos ensayos clínicos en seres humanos, antes de que dicha terapia sea una realidad, los autoresse encuentran alentados por estos hallazgos preliminares.

“Nuestros resultados, los que se mantuvieron con diferentes dosis, permiten suponer queen los estudios clínicos será factible ajustar la proporción de cápsides vacías a dosis de losvectores de genes, en función de la concentración preexistente de anticuerpos neutralizantesen una persona. Eso significa que podríamos personalizar la terapia génica para hacerla máseficaz para cada paciente”, concluyó la Dra. High. “Este trabajo debería hacer posible quese pueda ofrecer una terapia génica eficaz a la mayoría de los adultos que padecen dehemofilia B grave. Cada paciente recibiría una formulación final personalizada que contengasolo la cantidad apropiada de cápsides vacías para neutralizar cualquier anticuerpopreexistente, y que permita que el vector que expresa el gen llegue al hígado”.

El estudio, “Overcoming Pre-existing Humoral Immunity to AAV Using Capsid Decoys”(Vencer la inmunidad humoral preexistente contra los AAV mediante el uso de cápsides“señuelos”), se publicó en la edición en línea de Science Translational Medicine de julio de 2013.

Fuente: ScienceDaily, 17 de julio de 2013

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grave. “Todos sabíamos que iba a ser un problema cuando yo comenzara amenstruar”, dice ella. “Sangré durante casi dos meses seguidos y estuvehospitalizada por alrededor de tres semanas y medias”.

Es importante que una joven que padece de un trastorno hemorrágico sepalo que es normal y lo que no durante sus primeros ciclos menstruales. “No esnormal empapar completamente una toalla sanitaria en una hora”, dice la Dra.Perriera. Entre las otras complicaciones que requieren atención médica seencuentran los cólicos intensos que interfieren con la escuela o las actividades,y el sangrado entre una menstruación y otra.

Para disminuir el sangrado abundante, es posible que se necesite tratamientohormonal. Pero los medicamentos para tratamiento hormonal también se indicancomo métodos de anticoncepción para las mujeres sexualmente activas, lo quealgunas veces puede representar una inquietud de tipo religioso, cultural o de otrotipo para los padres. Cuando era más joven, los médicos de la Sra. Buurma lerecetaron “la píldora” como medicamento hormonal continuo para aliviar sussíntomas. “Nosotros somos católicos. En nuestra religión, el uso deanticonceptivos no es aceptable”, explica ella. Pero sus padres le aclararon quetomar la píldora no estaba en contra de la doctrina de la iglesia ya que ella no laestaba usando para evitar un embarazo. Otras opciones hormonales incluyenciertos dispositivos intrauterinos (DIU) o los implantes hormonales.

“Desearía que los tratamientos hormonales no se comercializaran comoanticonceptivos. Son para controlar la menstruación. Son para controlar elsangrado”, dice la Dra. Perriera. Sin embargo, ella reconoce que algunos padrestienen ciertas preocupaciones y pueden solicitar que se usen primerotratamientos no hormonales. Ahí es cuando los hematólogos pueden ayudar.

Puede ser una buena idea visitar al hematólogo para considerar lostratamientos, ya que cada niña que padece de un trastorno de sangrado presentaun grado diferente de intensidad con el sangrado menstrual. “Por ejemplo, a lasmujeres con la enfermedad de von Willebrand les pueden recetar una hormonallamada DDAVP que viene en forma de un spray nasal para usar durante lasmenstruaciones para disminuir el flujo del sangrado”, dice el Dr. Sanjay Ahuja,MS, un pediatra hematólogo y oncólogo que trabaja con la Dra. Perriera. “Esposible que las mujeres con la enfermedad de von Willebrand de tipo IIInecesiten remplazo del factor durante las menstruaciones”. Además, en laspacientes con sangrado fuerte, los médicos también combinarán medicamentoshormonales y no hormonales, expresa él.

Ninguna jovencita debería sufrir en silencio. “Creo que los mensajes de‘vas a estar bien’ y ‘solucionaremos cualquier problema juntas’ son muyimportantes”, agrega la Sra. Merritt.

9SUMMER 2013 • LIFELINE

HEMOP HI L IA CL I N IC S

All Children’s O utpatient Care Clinic Pediatric Cancer and Blood Disorders Center 601 5th Street South, Third Floor St. Petersburg, FL 33701 Phone: (727) 767-4931 www.allkids.org

Center for Children’s Cancer and Blood D isorders at Arnold P almer Hospital for Children 92 West Miller St., MP 318 Orlando, FL 32806 Phone: (321) 841-8588 www.orlandohealth.com

Joe D i M aggio Children’s Hospital Pediatric Specialty Center 1150 N. 35th Ave. Suite 520 Hollywood, FL 33021 Phone: (954) 986-2234

L ee M emorial Hospital Department of Pediatric Hematology & Oncology 9981 So. Healthpark Dr. Suite 156 Ft. Myers, FL 33908 Phone: (239) 332-1111

N emours Children’s Clinic, Jacksonville Department of Pediatric Hematology/Oncology 807 Children’s Way Jacksonville, FL 32207 Phone: (904) 697-3789 (904) 697-3600 www.nemours.com

University of Florida Department of Medicine Adult Hemophilia P.O. Box 100277 Gainesville, FL 32610 Phone: (352) 265-0725

University of Florida Pediatric Hematology/ Oncology P.O. Box 100296 Gainesville, FL 32610 Phone: (352) 273-9120 www.peds.ufl.edu/ divisions/hemonc/

N emours Children’s Clinic, O rlando Department of Pediatric Hematology/Oncology 13535 Nemours Parkway Orlando, FL 32827 Phone: (904) 697-3789, (904) 697-3600

P

S acred Heart P ediatric Hemophilia P rogram,

ensacola Phone: (850) 416-7712

S t. Joseph’s Children’s Hospital Pediatric Hematology Oncology Out-patient Clinic 3001 W. Dr. Martin Luther King Jr. Blvd. Tampa, FL 33607 Phone: (813) 554-8294 or (813) 321-6820

The University of M iami Hemophilia Treatment Center Pediatric Clinic Location Alex’s Place at Sylvester 1475 NW 12th Avenue Suite C103 Miami, FL 33136 Phone: (305) 689-7210

Adult Clinic Location ACCW-3A 1611 NW 12th Avenue Miami, FL 33136 Phone: (305) 243-6925 www.htcextras.org

U S F Adult Hemophilia Center Department of Internal Medicine 12901 Bruce B. Downs Boulevard, MDC 19 Tampa, FL 33612 Phone: (813) 974-1325

A B O UT T HI S PUB L ICATI ON

LIFE LINE is the official Newsletter of the Florida Hemophilia Association. It is produced quarterly and distributed free of charge to requesting members of the bleeding disorder community.

Florida Hemophilia Association Headquarters 915 Middle River Drive, Suite 421 Ft. Lauderdale, FL 33304 Toll Free: (888) 880-8330 www.floridahemophilia.org

N ewsletter Committee: Debbi Adamkin, Maria Rubin, Denise Schacher, Linda Thomas

D esign and P roduction: Group M, Advertising & Design 305-235-2538

Florida Hemophilia Association O ffice (888) 880-8330

PresidentJon Salk

Executive DirectorDebbi Adamkin(305) 235-0717dadamkin@floridahemophilia.org

National Hemophilia Foundation(800) 424-2634

Hemophilia Federation(800) 230-9797

LA KelleyCommunications, Inc.Free resource material on Hemophilia(978) 352-7657

C O NTACT NU M BE R S M I SS I ON S TAT EMEN T

Do the 5

1 Get an annual comprehensive check-up at a hemophilia treatment center. 2 Get vaccinated – Hepatitis A and B are preventable. 3 Treat bleeds early and adequately. 4 Exercise to protect your joints. 5 Get tested regularly for blood-borne infections

11SUMMER 2013 • LIFELINE

FHAResourceCenterThe Florida Hemophilia Association, Inc (FHA) is a Not-for-Profit organization that isdedicated to enhancing the quality of life in the bleeding disorders community by creatingprograms and services that provide education, emotional support and advocacy. We arecontributing toward research to ultimately find a cure.

Florida Hemophilia Association(Formerly known as Florida Chapter, NHF)915 Middle River Drive, Suite 421Ft. Lauderdale, FL 33304

Golf Tournament

SAVE THE DATE • SAVE THE DATE • SAVE THE DATE • SAVE THE DATE • SAVE THE DATE • SAVE THE DATE

Monday, December 9, 2013Lago Mar Country Club500 NW 127th Avenue, Plantation, FL 33325

Consider joining a committee! We need help with:Auction and Raffle Items, Golfers and Volunteers. Please email info@floridahemophilia.org if you interested in helping us out!