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My Hem-B Journey from On-Demand to Prophy by Alex Naranjo

Adapted from the story Alex shares as a Hemophilia Peer for Sanofi Genzyme. Peers have been compensated for sharing their stories. This story reflects the real-life experiences of a patient with hemophilia B who has been prescribed a Sanofi Genzyme product. However, individual experiences may vary, and this story is not necessarily representative of what another person may experience.

This is a paid public announcement from Sanofi Genzyme and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to a Sanofi Genzyme website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will. 

When I was seven years old, growing up in Colombia, I wanted to see how the neighborhood looked from the roof of my house. I knew I shouldn’t have been up there, but I was a curious kid who didn’t like to be held back. On my way down, I fell and got a bad cut that landed me in the hospital for a week.

For someone with moderate hemophilia, I had a lot of bleeds growing up. This was primarily because I tested my limits, trying all the activities kids with hemophilia shouldn’t, and because of the available treatment at that time. We didn’t have prophylactic therapies to protect against bleeds. Every time I hurt myself, I’d have to go to the hospital for immediate treatment of plasma, taking days and weeks out of my childhood.

“Maybe if you didn’t take so many risks!” my mother told me. Yeah, right.

Hemophilia, to me, was a thorn in my foot, challenging my potential to move forward. I remember looking out the window of the hospital as a kid, gazing out over the landscape, longing for a life uninterrupted by bleeds – because I had no intention of slowing down.

Do you think I grew out of that? Of course not! As an adult, I regularly saw my hematologist for check-ups, and if I got hurt, I’d go to the hospital for a factor infusion. But those bleeds could keep me at home recovering for weeks, so I missed a lot of work. In 1996, when my wife, Isabel, gave birth to our second daughter, Isabella, it finally clicked for me that I needed a steady job, with a steady income to support my family, and good insurance. And, by no means was I doing enough to manage my hemophilia.

When my youngest daughter was old enough to take an interest in playing soccer, I started helping coach her team. I love soccer and was excited to get involved, but it was even more reason for me to stop gambling with my health and my safety.

I told my doctor at the hemophilia treatment center I wanted to try something different with my treatment. I wanted to get ahead of my bleeds by treating before not after – as I’d done my whole life. I started going to hemophilia symposiums, which were great for staying up to date on different treatment options, and that’s where I learned about a prophylactic treatment for Hemophilia B that might work for me. I immediately got in touch with my doctor and told him I wanted to discuss trying this treatment.

I made the switch from on-demand to prophy six years ago. I was well-prepared for the transition. To be sure, doing infusions every two weeks, finding a vein, is stressful, but I am comforted knowing I am taking steps to be prepared for the future. Of course, everyone’s experience is different, and patients should talk to their doctor about what’s right for them.

Prophy allows me to be proactive about my health and focus on what I want to do.

I am not only being proactive about my health but about my happiness. I’ve biked all the way from Washington D.C. to Florida. I boogie-boarded in Brazil and surfed in Hawaii. I went to Mexico, and I swam in beautiful, blue water and enjoyed sunsets with my family. My life has been full, and there’s so much more I plan to do.

I wonder sometimes what my life would have looked like if prophylactic treatments were available earlier in my life. It is amazing to see today that kids with hemophilia have the opportunity to live life in a way I wasn’t afforded. However, as a father now, I can’t recommend standing on roofs.

To hear other stories like mine or learn about a treatment option for HEM B, check out https://bit.ly/30mc6fE.

 

© 2021 Genzyme Corporation. All rights reserved. Sanofi Genzyme is a registered trademark of Sanofi or an affiliate.

MAT-US-2108858-v1.0-11/2021

Women, the community, and hemophilia B

Our community members often identify themselves by the type of bleeding disorder they have, or by the treatment they are on. But it’s important to remember that there are family members and professional caregivers who care for them, who are sometimes patients themselves. Take a moment to show gratitude for the people who help hold everything together. Please read the public-service message below from Medexus, to see what one company is doing to honor women in our community.

Here’s what’s happening in the hemophilia B space!

Medexus Pharma, the people behind IXINITY® [coagulation factor IX (recombinant)], has launched a webpage specifically to honor the remarkable women they are calling the Heroines of Hemophilia B. These are women who advocate for themselves—as women with hemophilia B—or have made an impact lending their support to others.

The work women do as healthcare professionals is absolutely essential. And many times, the key provider of care in the family setting is also a woman. Then there are the women who have hemophilia B. As a patient population, these women are often overlooked. It’s time they got the care and support they deserve.

One of the great things about the Heroines of Hemophilia page is that it gives you a way to show your gratitude by nominating someone in your life. If you know of a woman who has courageously taken a stand to advocate for herself, or gone over and above in the care of someone else, go to www.HeroinesofHemophiliaB.com and nominate her as a Heroine of Hemophilia B.

This is a community in every sense of the word. Here’s a way to show to it.

INDICATIONS AND IMPORTANT SAFETY INFORMATION

What is IXINITY®?

IXINITY [coagulation factor IX (recombinant)] is a medicine used to replace clotting factor (factor IX) that is missing in adults and children at least 12 years of age with hemophilia B. Hemophilia B is also called congenital factor IX deficiency or Christmas disease. Hemophilia B is an inherited bleeding disorder that prevents clotting. For children and adults, your healthcare provider may give you IXINITY for on demand treatment to prevent bleeding episodes or when you have surgery. For adults, your healthcare provider may also give you IXINITY for routine prophylaxis.

IXINITY is not indicated for induction of immune tolerance in patients with hemophilia B.

IMPORTANT SAFETY INFORMATION for IXINITY

  • You should not use IXINITY if you are allergic to hamsters or any ingredients in IXINITY.
  • You should tell your healthcare provider if you have or have had medical problems, take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements, or herbal remedies, have any allergies, including allergies to hamsters, are nursing, are pregnant or planning to become pregnant, or have been told that you have inhibitors to factor IX.
  • You can experience an allergic reaction to IXINITY. Contact your healthcare provider or get emergency treatment right away if you develop a rash or hives, itching, tightness of the throat, chest pain, or tightness, difficulty breathing, lightheadedness, dizziness, nausea, or fainting.
  • Your body may form inhibitors to IXINITY. An inhibitor is part of the body’s defense system. If you develop inhibitors, it may prevent IXINITY from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for development of inhibitors to IXINITY.
  • If you have risk factors for developing blood clots, the use of IXINITY may increase the risk of abnormal blood clots.
  • Call your healthcare provider right away about any side effects that bother you or do not go away, or if your bleeding does not stop after taking IXINITY.
  • The most common side effect that was reported with IXINITY during clinical trials was headache.
  • These are not all the side effects possible with IXINITY. You can ask your healthcare provider for information that is written for healthcare professionals.

For more information about IXINITY, please see full Prescribing Information, including Important Patient Information.

You are encouraged to report adverse events related to Medexus Pharma products by calling 1-877-215-2297. If you prefer, you may contact the Food and Drug Administration directly. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Share your perseverance. Share your gratitude. Share your why.

This is a paid public announcement from Sanofi Genzyme and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be direct to a Sanofi Genzyme website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.

At Sanofi Genzyme, treating rare blood disorders isn’t just what we do—it’s who we are. Because rare is in our blood. It’s why we strive to make a difference in the lives of patients, caregivers, and physicians. It’s why we pursue the best possible therapies, services, and resources. Why we strive to research, develop, and discover groundbreaking advancements. Why we use our global scale to create a true, lasting difference. From pipeline to patients, we know that our commitment has the potential to truly transform. To shift the trajectory. To change lives.

Whether you are a patient, caregiver or connected to a family with a history of bleeding disorders, our highest priority is your health and well-being. During these ongoing, uncertain times, one constant remains true – the perseverance and support among the bleeding disorders community remains steadfast and stronger than ever.  

See More

Though we haven’t been able to connect in-person, we hope to continue to celebrate our community in new ways every day. Each one of us has a story. A reason why. While our stories may be different, we are connected by a common factor. A desire to give back, to uplift, to seek and to support.

With that spirit in mind, Sanofi Genzyme invites you to Share Your Why.

Through the Share Your Why website, you can share common experiences and discover authentic and relatable stories from people just like you. You can support and inspire others in the hemophilia community by uploading your story and sharing your why through a photo, poem, video or anything else that captures your why – though we’ll only share your why with the community with your approval. You can also ask someone who supported you to share their story as well.

If you are looking to connect, you can also find contact information for the Sanofi Genzyme Community Relations and Education Managers, or CoRes, who are dedicated to providing education to the hemophilia community.

Share your inspiration. Share your perseverance. Share your gratitude. Share your why.

Learn more at shareyourwhy.com.

MAT-US-2107460-v1.0-08/2021

Is your emergency plan up to date?

Our publications address the many challenges you face as you begin life with hemophilia. For this week’s HemaBlog, we suggest you check out this website to learn more about handling life’s many phases and changes!

Laurie

This is a paid public announcement from Takeda and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to a Takeda website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.

Big changes are coming—as schools and workplaces continue to reopen, we all need to prepare for what’s ahead. For people or loved ones with a bleeding disorder, part of that preparation can include completing an emergency preparedness plan. BleedingDisorders.com has information and reminders that can help you get your plan in order.

Add a medical bracelet to your list of necessary supplies
In case of an emergency, having a medical ID bracelet and carrying a wallet card may help save precious time. There are other things you can do now to prepare for an ER visit that may happen in the future. Download and print an ER checklist to take some of the stress away from urgent situations that may arise.

Take advantage of the calm before the storm
There’s no way to know when an emergency may happen. But there are steps you can take now to prepare yourself, your family, AND the ER staff for any future emergency situations:

  • Find an ER with bleeding disorder experience (ask your doctor for a recommendation)
  • Schedule a pre-emergency appointment at your ER of choice
  • Get emergency preparation information from your hemophilia treatment center team

Find more information about each of these steps and other ways to prepare at BleedingDisorders.com.

Make your voice heard
Until a cure is found, bleeding disorders need to be actively managed throughout a person’s life. That means starting out with a management plan that you are confident fits your needs and goals, and then staying connected with your doctors to make sure that plan changes if needed over time. BleedingDisorders.com offers several discussion guides aimed at helping you better communicate with doctors about the long-term management of your or your loved one’s bleeding disorder. Download and use the guide that works best for you.

Connect with the Bleeding Disorders community on Facebook, Instagram, YouTube, and Twitter. You can also sign up to learn more about a program designed especially for the bleeding disorders community.

References:

  1. Canadian Hemophilia Society. The emergency room: prepare to succeed. Accessed May 25, 2021. https://www.hemophilia.ca/files/er2.pdf

©2021 Takeda Pharmaceuticals U.S.A., Inc. Lexington, MA 02421. 1-877-TAKEDA-7. All rights reserved. TAKEDA and the TAKEDA logo are trademarks or registered trademarks of Takeda Pharmaceutical Company Limited.

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