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3 Ways to Get Motivated and Protect Joint Health

Sponsored content by Sanofi

As we move into the summer season, now is the perfect time to go outside, grab some fresh air, and get moving! Maintaining healthy joints is important for everyone, especially people living with hemophilia. Nearly 80% of bleeds in hemophilia occur in the joints, and prioritizing joint health can help lead to a higher quality of life. Exercise and physical activity can protect joint health, but sometimes we all need a little extra motivation. Below are three ways to put a little pep in your step and stay on the path to strong and healthy joints.

  1. Choose an activity you enjoy

Some people are workout warriors, jumping at any opportunity to go for a long run or participate in a competitive sport. But there are many ways to get active at varying levels of intensity. Choosing an activity, or range of activities, that you find fun can help you start and stick to a lifestyle that incorporates exercise.

Not a marathon maven? Not a problem. If you’re the outdoorsy type, you can go for a hike in your local state park, start a garden in your backyard, run a few errands on foot, or take a dip at the local pool. More of an inside person, or weather not cooperating? Take a yoga class, lift some weights at home or at the gym, or get active in your living room by walking in place, stretching, or doing a Pilates video. Even routine work around your house and yard is a great way to get moving and accomplish a task at the same time.

Whatever your interests and preferences, there’s a way to work them into an active lifestyle for healthier joints. Just make sure to work with your healthcare team to choose activities that are suitable for you and your condition.

  1. Get in the habit

Establishing a routine is another great way to get and stay motivated. When an activity becomes a part of your daily or weekly routine, you may not even have to think about it to make it happen. For example, get used to taking the stairs instead of the elevator at work. Park farther away from the grocery store. Start taking walks over your lunch break. Walk in place or do strength exercises while watching TV in the evenings. The more you get used to staying active, the easier it can be to maintain a regimen. And if you miss a day, don’t fret. Go easy on yourself and take breaks as needed, getting back in the saddle as soon as you’re ready. Just remember to work with your healthcare team when starting any new exercise routine.

  1. Enlist a buddy

Carving out solo time to stay active can be a great form of self-care and an opportunity to check in with yourself. But sometimes finding a partner can make active time more fun and interesting while raising accountability. You and your exercise partner can motivate each other, even sparking a little friendly competition. Your buddy may introduce you to a new activity you wouldn’t otherwise have tried, expanding your horizons for exercise options. And finally, a friend or family member can help you stay consistent, because when someone else’s time is on the table, you’ll want to make sure you show up and stay on track.

To learn more, visit The Joint Movement, hemjointmovement.com, a Sanofi website dedicated to empowering
people living with hemophilia to be more active. The Joint Movement is for people of all mobility levels and provides resources and inclusive community workshops that promote joint health. Let’s get out there and get moving!

Young friends on a hiking trip, in the mountains, at sunrise

MAT-US-2204096-v1.0-06/2022

Boost Mental Well-Being with Empowerment

Sponsored content by Sanofi

May is Mental Health Awareness Month. Since it is not uncommon for people with hemophilia to experience higher rates of mental health issues, this is an important topic for the bleeding disorders community. If you or someone you care for has hemophilia, it can be a time to be mindful of mental health and consider taking empowering steps toward improved well-being.

Studies have shown that nearly four out of 10 adults living with hemophilia met the criteria for depression,¹ and that people with hemophilia and depression are less likely to adhere to a proper treatment regimen.² Withdrawing from friends, family, and the community can also happen over time, all of whom may help with maintaining a well-rounded and connected life.

Mental health not only affects a person emotionally, but also influences physical well-being. “There
is no health without mental health,” said Debbie de la Riva, CEO of Mental Health Matters Too.
“When someone is struggling with a mental health disorder, he/she is less likely to engage in
healthy self-care behavior, such as getting enough exercise. This can have a lasting, negative
impact on their joints and increase the risk of bleeds.”

If you are struggling with your mental health, it is important to talk to someone about it and
possibly seek treatment. Recognizing and acknowledging your condition is critical to managing
mental health. Visit the National Alliance on Mental Illness to learn about the signs and symptoms
of common mental health conditions, such as depression and anxiety, and to better recognize them in
yourself or a loved one. Through honest, open conversation, you can help yourself and others by
breaking down stigmas associated with mental health.

“I encourage people to recognize what mental health conditions look like and how to have that
conversation,” de la Riva says. “It’s time we break the stigma and educate ourselves.”

Another way to potentially improve mental well-being is by taking steps toward a greater sense of

empowerment. Empowerment allows patients and caregivers to have a sense of control over mindsets
and the confidence to make choices and solve challenges that arise. Some steps you can take to help
increase your sense of empowerment include:

  • Embracing uniqueness
    What traits make you special? Think about characteristics like creativity, gratitude, and bravery.
    These are strengths that can help you navigate difficult situations.
  • Engaging in self-advocacy
    Self-advocacy means understanding your needs and speaking up for yourself in order to have those
    needs met.
  • Creating empowering partnerships
    Partners in empowerment support you in your decisions. They can be friends, family, a care team,
    others with hemophilia, and other people in your life who believe in you and your abilities.

Empowerment is an active process that can be nurtured, practiced, and developed over time. One way
to practice empowerment is through visualization. The activity below can be used to help you
visualize the situations, behaviors, and people who give you confidence in navigating life:

  1. On a piece of paper, write a word that describes a situation where you feel in control of your surroundings and empowered to speak about and make decisions regarding your hemophilia. Make that word so large it fills as much of the space as possible.
  2. Fill in the space around your big word with actions you take in that situation that make you
    feel confident.
  3. Write down the names of people who support you, continuing to fill in as much space as you
    can. Post this somewhere you will see it often as a reminder of what makes you feel empowered.
    Sanofi is committed to empowering people with hemophilia. If you’d like to learn more, you can also connect with your local Sanofi Community Relations and Education, or CoRe, Manager, who can provide
    education and share resources for additional information.

¹https://pubmed.ncbi.nlm.nih.gov/22642565/#:~:text=Adult%20patients%20with%20haemophilia%20have,h ealth%20outcomes%20and%20treatment%20adherence
²https://www.dovepress.com/interrelationship-between-depression-anxiety-pain-and-treatment-adhere-pe er-r eviewed-fulltext-article-PPA

MAT-US-2201856-v1.0-03/2022

Blood is My Bond to Family and My Career Calling

Meet Carol Dematteis, Regional Director, Community Relations and Education Managers at Sanofi Genzyme

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.

LAK Image 1

Two things have shaped my life and given me strength – the hemophilia gene and post-traumatic stress disorder (PTSD). But as I learned from my dad in how he handled all the obstacles caused by his bleeding disorder, I can never give up. I am inspired by his drive to live fully and I am passionate about making a positive difference in the world. This is why I am a Regional Director, Community Relations and Education Managers at Sanofi Genzyme

My dad, Charles Carman, was born in 1938 with hemophilia. He was hospitalized through his Junior and Senior years of high school because of an uncontrolled bleed and was told by doctors that he might never walk again. At the time, the only treatment option was blood transfusions and the life expectancy was less than 20 years old.1

He beat the odds. He walked at his high school graduation. He learned to drive a stick-shift car despite the joint damage caused by bleeds in his ankles and knees. He even attended college several hours away and moved to California for graduate school. After graduate school, he landed his dream job as a research chemist in Houston. Then, obstacles appeared again. On his first day of work, he was denied employment after disclosing he was living with hemophilia.

My dad was a mentor to many. As they came and went through our home, I remember on occasion when I overheard someone say he was “the oldest living hemophiliac.” My dad was in his late 20s at the time and I was very confused because he didn’t look old. He was happy and, in my eyes, full of life. I also assumed all dads walked with a limp and were not able to fully extend their elbow or wrist. All I could see was my dad’s drive and passion for life.

But drive and passion are not treatments for hemophilia. When I was eight years old, my dad was hospitalized for a full year due to a life and limb-threatening bleed. He barely survived. I wasn’t aware until adulthood, but the trauma from his hospitalization and near-death experience is when I developed PTSD.

The fight continues

Becoming a parent only strengthened my tie to the hemophilia community. After my second daughter was born, I developed a life-threatening bleed and I was told it would be impossible to carry another child. To our surprise, a few years later our son Dylan was born and just like my dad, Dylan had hemophilia.

During the short time between his birth and hearing his diagnosis, I had a strange conflict internally. I hoped he didn’t have a bleeding disorder, but I also thought I would have a feeling of loss if hemophilia had left my life permanently. The first time I was scared and uncertain about how to be a parent of a child with a bleeding disorder was when Dylan was just four days old. I found his sleeper soaked in blood from a heel prick for newborn screening.

Day-by-day, I coped. When Dylan was 1 year old, his Hemophilia Treatment Center asked my husband and I to participate in the national Parents Empowering Parents program. This was my opportunity to find connections and better understand parenting a child with hemophilia. Soon after, I became a Parent Mentor to support families newly diagnosed with hemophilia.

Then I decided I needed to make advocating for people with hemophilia my career. More than 15 years ago, I joined the staff at my local Hemophilia Treatment Center as a Patient Advocate. This was without a doubt the best career decision as it brought me to my role as a Community Relations and Education Manager for Sanofi Genzyme.

Hemophilia will always be personal for me. My career allows me to emulate my dad’s drive and passion for the hemophilia community. But even better, I get to help families like mine as they navigate through life with hemophilia.

Share Your Why

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

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

 

MAT-US-2111142-v1.0-12/2021

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.

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