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Community Voices

Dear Addy: Workplace Disclosure

January 9, 2017

Dear Addy, I just accepted my dream job, and I can’t wait to get started. Unlike my last job, however, no one knows I have a bleeding disorder. When should I approach my new employer with this, and how much should I share? Sincerely, New Job Jitters Dear New Job, You only need to disclose […]

How I Cope With Pain

January 5, 2017

Note:聽This article is for educational purposes only and is not intended to be construed as direct medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers. Pain is a serious medical concern in our country. Approximately […]

Infusing Love: Smells and Sounds

January 4, 2017

The senses of sound聽and smell are very powerful. Sometimes a smell can spark a memory of a wonderful meal simmering on a stove or the smell of the air from a perfect breeze on a spring day can transport us back. The sounds of elevators dinging as people anxiously wait their turn and the sliding […]

Infusing Love: Naughty or Nice 鈥 It鈥檚 a Choice

December 28, 2016

One of my co-workers often uses the phrase unconscious incompetence. It essentially means you just don鈥檛 know what you don鈥檛 know. The recent election surprised many. I鈥檒l stay away from the politics but I can鈥檛 help but reflect on the flippant comments made by a constitutional law professor post-election who referred to those who were […]

Dear Addy: New Years Resolution

December 26, 2016

Dear Addy, My new year鈥檚 resolution is to be a stronger advocate for the bleeding disorders community. How do I reach people and where can I find information to share? Signed, Want to Be the Change Dear Change, You came to the right place! HFA has several resources available for people to increase their awareness […]

Infusing Love: Growing Up So Fast

December 14, 2016

  This week鈥檚 Infusing Love entry is a poem co-written by our longtime blogger, Kari, and her daughter, Scarlett. I’m learning to be safer, watch my step, and stay out of harms way. Each day a new lesson, on how to exercise and how to play! I might start off feeling intimidated, scared or shy. […]

Dear Addy: Giving Back

December 12, 2016

Dear Addy, I want to give back this holiday season, but I鈥檓 not sure how. Can you recommend ways to be more involved in my community? Signed, Inspired to Serve _____________________________________________________________________________________________________________________________________________________________ Dear Inspired, The holiday season is a good time to reflect on giving to a cause or serving those in need. There are many […]

Infusing Love: Taking a Stand

December 7, 2016

  Every day we advocate for our children and ourselves. Our advocacy ranges on a small scale such as requesting a drink refill when we need one at restaurant to advocating for our children on a larger scale when requesting a doctor to infuse your child before any sort of x-ray when in an emergency […]

Infusing Love: A Boy & His Dog

November 30, 2016

Thomas had a stuffed animal when he was little. “Dog*” went through a lot with us. He was a constant companion, friend and source of comfort. Dog stayed in the hospital, went to clinic visits and traveled with us. We would literally pack factor for an ER visit with one hand and grab Dog with […]

Dear Addy: Formularies

November 28, 2016

Dear Addy, I keep hearing the terms formulary and preferred drug list. What do they mean and should I be worried if my current insurance plan has one? What about my friends that have Medicaid? Signed, Informed Consumer ____________________________________________________________________________________ Dear Consumer, A formulary is a list of prescriptions drugs that are covered by a particular […]

Infusing Love: He Needed Me

November 23, 2016

I am exhausted. So very exhausted. I am pleading to myself that there isn鈥檛 something wrong; that the whimpers and small cries I hear as he sleeps aren鈥檛 there and that it is from sleep deprivation. I am drifting in and out of sleep on the baby glider that still graces his room even though […]

Caregiver Heroes: William

November 17, 2016

In honor of National Caregiver Month, we鈥檒l be featuring 鈥淐aregiver Heroes鈥 throughout the month of November. While all in the bleeding disorders community are heroes in their own special ways, these folks are being given a special shout-out for the ways they take care of their loved ones and themselves. Meet William from Tennesse. William […]

Dear Addy: Open Enrollment for New Users

November 14, 2016

Dear Addy, I’m applying for health insurance for the first time this open enrollment period. With a bleeding disorder, what should I look for in an insurance plan? Signed, First-time Subscriber _____________________________________________________________________________________ Dear Subscriber, First, an聽Open Enrollment Period聽is the time during the year when health insurance companies or聽HMOs (health maintenance organizations)聽are required by law to […]

Infusing Love: Finding His Voice

November 9, 2016

    Recently a friend shared a quote that really resonated with me: 鈥淎 negative mind will never give you a positive life.鈥 I recited that quote at least one hundred times the day she shared it. I even had to find a pretty Google image of the quote, print it off, and hang it […]

FitFactor: The Benefits of Hitting the Weight Room

October 31, 2016

Weight training plays an important role in keeping your body fit and healthy. It鈥檚 a great way for people with bleeding disorders to strengthen muscles and joints and by doing so, reduce the frequency and severity of bleeds. We spoke with Michael Zolotnitsky, Doctor of Physical Therapy, about the benefits of weight training and his […]

Dear Addy: Joint Health

October 31, 2016

  Dear Addy, I鈥檓 27 years old with severe hemophilia B. I鈥檓 caring for myself and my joints, including infusing to prevent bleeds as much as possible. As you know, with time, joints just can鈥檛 move as freely. Is there anything I can do? Do you recommend any exercises that can improve movement? Signed, Achy […]

Infusing Love: Sisterly Bond

October 26, 2016

I adore the 鈥淥n This Day鈥 feature on Facebook. It is a wonderful way to look back at the past to see what has happened on any given day in past years. It often reminds me of those moments that may have slipped my mind in a blur of parenting madness over the last fifteen […]

Infusing Love: Stealing My Joy? Never!

October 19, 2016

  For over a year my family has lived like most everyone else in the world.聽 We get up, go to work and school, have fun, go on trips, eat and play鈥.it鈥檚 all very good.聽 Our oldest son has gone away to college and our youngest is in the fifth grade. The blessing has been […]

Dear Addy: Project CALLS

October 17, 2016

Dear Addy, My insurance company is making it increasingly difficult to access the services and products I need to care for my bleeding disorder, which has led to delayed care. How can I report these issues? Signed, Frustrated __________________________________________________________________________________________________________________ Dear Frustrated, You are not alone in your concerns. In August 2015, HFA launched Project CALLS […]

Infusing Love: Normal Is as Normal Does

October 12, 2016

As I have become more involved in the hemophilia community over the last few years, and read more stories online, it is evident that each person with hemophilia and the people caring for them have such different experiences with bleeds and treatments. When Chris was young, we were told Chris wasn鈥檛 your 鈥渢ypical鈥 child with […]

Infusing Love: Respecting Our Elders

October 5, 2016

I have been thinking a lot about my role in my bleeding disorder community as Max becomes an adult. Where is my place as a mom of an adult son with hemophilia? I have been given the gift of having a job that keeps me connected and involved, but what about the other old timers? […]

Dear Addy: Carrier Testing

October 3, 2016

Dear Addy, Given our family history, my 8-year-old daughter could be a carrier of hemophilia. When should she get tested? Signed, Curious Carrier ____________________________________________________________________________________ Dear Curious Carrier, When to get tested is a personal decision, and you have a lot to consider. Importantly, consider that determining if your daughter is a carrier now could enhance […]

Infusing Love: Growing Our Family

September 28, 2016

Time moves so quickly. As adults we blink and a year has passed. As kids, we couldn鈥檛 wait to be adults. I feel like it was just yesterday that we were adjusting to life with one itty-bitty baby, with a chronic condition. Now we are in a routine, his disorder is well managed, and he […]

Infusing Love: Aprendiendo a vivir con un nuevo diagn贸stic

September 21, 2016

von Willebrand Disease鈥 驴Qu茅 es eso? 驴Qu茅 clase de enfermedad tienen mis hijas? 驴Es contagioso? 驴Qu茅 le puede pasar? Esta y much铆simas preguntas m谩s fueron las que nos hicimos el d铆a en que la pediatra en Albany, Nueva York, diagnostic贸 nuestra hija menor, Juliemar, 8 a帽os a este momento, con von Willebrand Disease (vWd), tipo […]

Dear Addy: Advocacy Presentation

September 19, 2016

Dear Addy, I have to do a presentation in front of my eighth grade class on a cause I care about. I’d like to focus on bleeding disorders because I have von Willebrand Disease (vWD), but there’s so much information and I don鈥檛 know where to start. Help! Signed, Anxious for an A   Dear […]

Infusing Love: No (Wo)Man鈥檚 Land

September 14, 2016

My 10-year-old daughter, Natalie, has been officially DNA tested and is a carrier of the hemophilia gene. This wasn鈥檛 particularly surprising or upsetting to my husband or myself, or even Natalie. For a child, she has a remarkably good grasp on the genetics of hemophilia and she understands what it means to be a carrier. […]

Infusing Love: A Mom Intervention

September 7, 2016

Benny starts high school this week. How did that happen? When I started working at HFA he was in kindergarten. I remember being amazed at his astounding ability to put 100 piece puzzles together at 5 years old and spend hours building things with Legos. At the start of second grade, despite untold hours trying, […]

Dear Addy: Mental Health

September 5, 2016

Dear Addy, I’m concerned about how my bleeding disorder is effecting my mental health. However, it’s not clear that my insurance covers a therapist or counselor so I keep putting off seeking counseling or therapy. How important is mental health and where do I find the correct insurance information? Sincerely, Taking Control _________________________________________________________________________ Dear Control, […]

Infusing Love: Thank You to Our Teachers

August 31, 2016

Through out the school year I have such a hard time balancing being the mom that every teacher or administrator loves to communicate with verses being the mom that everyone wants to run away from. I decided to sit down and write exactly what I wish I could say to every teacher or administrator Scarlett […]

Dear Addy: Back to School Secondary Education

August 22, 2016

  Dear Addy, My son is starting kindergarten this fall and I鈥檓 concerned about what will happen if he has a bleed at school. What are his rights at school and how do I ensure he has the same opportunities as other students? Sincerely, Proactive Parent ______________________________________________________________________________________________________________________________________________________________________________________________________________ Dear Proactive, With the new school year approaching, […]


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