Changing Hemophilia

Changing Hemophilia Changing Hemophilia® is a community for people affected by hemophilia and rare bleeding disorders. Product Mention. Side Effects. Links and Tags. Medical Advice.

Terms of Use & Comment Guidelines

We’d like to be clear, direct, and up front about the restrictions within which the Changing Hemophilia® page must operate. The Changing Hemophilia® page exists to bring together the community of people, from patients to caregivers to friends and relations, whose lives are affected by hemophilia, and to offer support and education through that c

ommunity. Because the page is sponsored and owned by Novo Nordisk, a pharmaceutical company, it is governed by FDA regulations and other federal laws. While it is the goal of the Changing Hemophilia® page to foster open communication and a candid exchange of ideas, stories, and sentiments, there is simply some content we are restricted from publishing, or allowing to be published, on the page. It is not our intention to censor our community members in any way; however, we must operate within the rules. The following Commenting Guidelines explain the restrictions of this page. Thank you for your understanding and for ensuring that your comments fit within these guidelines. While Novo Nordisk reserves the right to remove any posting at its sole discretion, we are working to foster communication and candor; in this spirit, we will only remove comments that violate these guidelines. Please contact us via private message with any questions or concerns.

1. Please don’t reference the products of any pharmaceutical company, whether positively or negatively. Important regulations govern exactly what can be said about products within the context of this page—it’s better to just leave them out of the conversation.

2. Facebook is not the appropriate forum for reporting side effects of prescription drugs. So that we can best deal with the information, please report side effects to us by calling 1-800-727-6500, or directly to the FDA by visiting www.fda.gov/medwatch or calling 1-800-FDA-1088.

3. While we do not endorse any page content other than our own, we must take care that all of it—including links to other pages and tags to other pages—is within the regulations that govern our page. Because we can’t take responsibility for the content on other websites, please do not post any links or tags on this page.

4. Vulgarity or Personal Attacks. The Changing Hemophilia® page is a community for all, without discrimination on the basis of ethnicity, race, religious affiliation, age, or gender orientation. It is a place of respect. We prohibit comments containing profanity or any hostile, harassing, or discriminatory language.

5. While we appreciate the community’s desire to help one another, and while we encourage sharing experiences, please leave the dispensing of medical advice to the medical professionals—and even if you are a medical professional, please leave it to an individual’s health care practitioner. Medical advice can have serious implications. We are all different, with different health histories and concerns. A treatment that worked for you or someone you know won’t necessarily work for someone else. In the interest of keeping everyone safe, please don’t post specific information about treatments, techniques, therapies, medications, etc.

6. Off Topic. We’d like the Changing Hemophilia® page to be a forum for conversation and for sharing experiences, and in that regard, this is a nebulous area; however, comments occasionally arise that are clearly unrelated to the topic, or are spam, or are promotions for goods or services. These comments are not allowed on the page.

7. Miscellaneous. In the event that a comment does not fit into one of these categories but nonetheless is not suitable for the Changing Hemophilia® page, Novo Nordisk reserves the right to remove any posting at its sole discretion.

The Miller sisters–Samantha, Jane, and Maggie–are a testament to the importance of expert   care. Although a frightening...
08/06/2025

The Miller sisters–Samantha, Jane, and Maggie–are a testament to the importance of expert care. Although a frightening bleed as a toddler led to the eldest sister’s diagnosis, all three girls are now learning to manage their condition as they grow, thanks to the guidance of the Hematology team at Akron Children's.

Learn more about their story here: https://www.akronchildrens.org/inside/2025/04/16/three-sisters-with-hemophilia-thrive/

Mindy and Geoff Miller of Uniontown have four kids. Three are girls, and they have the bleeding disorder called hemophilia. “Geoff has hemophilia, and we

Protecting your joints is a lifelong priority when living with hemophilia. Small joint bleeds can be easy to miss, espec...
08/04/2025

Protecting your joints is a lifelong priority when living with hemophilia. Small joint bleeds can be easy to miss, especially in large joints, but can cause lasting damage.

In this article, MyHemophiliaTeam shares symptoms to watch for, like a tingling or a warm feeling around the joint, and offers tips on protecting your joints while living with hemophilia: https://www.myhemophiliateam.com/resources/ways-to-protect-your-joints-with-severe-hemophilia

If you or someone you love is living with severe hemophilia A or hemophilia B, you’re likely well aware of the risk of painful and debilitating joint blee

Do you ever feel trapped due to the challenges and burden of  ? In this Hemophilia News Today article, Shellye Horowitz ...
07/31/2025

Do you ever feel trapped due to the challenges and burden of ? In this Hemophilia News Today article, Shellye Horowitz recounts the challenges she faced after her initial diagnosis with mild hemophilia A and how connecting with the community, advocates, and healthcare providers helped her discover care options.

Read more here: https://hemophilianewstoday.com/columns/options-exist-even-when-hemophilia-makes-you-feel-trapped/

Columnist G Shellye Horowitz knows what it's like to feel trapped in her hemophilia pain. She also knows what it's like to find help.

Did you know that sometimes, when people with   use clotting factor to stop or prevent bleeds, their bodies can create s...
07/29/2025

Did you know that sometimes, when people with use clotting factor to stop or prevent bleeds, their bodies can create something called inhibitors? Inhibitors are antibodies that can stop treatments from working, making it harder to control bleeds. Most people with inhibitors show signs like needing more factor or higher doses, but some don’t realize it’s happening. The only way to know for sure is to get an inhibitor test.

Learn more below from World Federation of Hemophilia.

Inhibitors are a serious complication that may occur when people with have an immune response to treatment with clotting factor concentrates. Learn more about inhibitors: https://bit.ly/3Wc4KFB

Being a parent is a journey of joy and challenges, but for those caring for a child with  , the role takes on extra laye...
07/23/2025

Being a parent is a journey of joy and challenges, but for those caring for a child with , the role takes on extra layers of responsibility.

Parents become experts in their child’s condition by navigating the complexities of monitoring bleeds, documenting symptoms and administering medication.

In her column in Hemophilia News Today, Cazandra Campos MacDonald, a mother of two sons with severe hemophilia A, shares her experiences and reminds other parents to take time for themselves and accept help from loved ones: https://hemophilianewstoday.com/columns/parent-caregivers-must-fill-their-well-self-care/

Those who serve as parents and caregivers have much to give, but they need to remember self-care, columnist Cazandra Campos-MacDonald writes.

Diagnosed with severe   A at just 18 months, former pro cyclist Alex Dowsett has shown the world what’s possible! With c...
07/21/2025

Diagnosed with severe A at just 18 months, former pro cyclist Alex Dowsett has shown the world what’s possible! With contact sports like rugby and football off the table, Alex turned to cycling at an early age and became a two-stage winner at the Giro d’Italia, six-time National Time Trial Champion and Former World Hour Record Holder.

Now retired, he’s empowering kids with hemophilia to live full, active lives through his nonprofit Little Bleeders.

Watch Alex at his first road race since retirement here: https://www.youtube.com/watch?v=L7l-PL5iads

Everything you need to know about the Virtual Etape du Tour is right here; https://www.zwift.com/uk/events/series/virtual-letape-du-tour Formerly the Perfs, ...

New to the   community or just want a quick refresher? It’s common to confuse the types of hemophilia and missing clotti...
07/17/2025

New to the community or just want a quick refresher? It’s common to confuse the types of hemophilia and missing clotting factors.

Although hemophilia A and hemophilia B produce similar symptoms and are diagnosed using the same medical tests, hemophilia A is much more common and occurs when the body doesn’t have enough blood clotting factor 8.

Learn more about Hemophilia A its causes and symptoms from Hemophilia Federation of America: https://www.hemophiliafed.org/disease_type/hemophilia-a/

About Causes Symptoms Diagnosis Inhibitors About If you have hemophilia A (also called classic hemophilia), you are missing or have a deficiency (lower level) of clotting factor VIII (FVIII). This means your blood cannot successfully form a clot. Hemophilia A is hereditary. Because it is an X-chromo...

Even with advances in treatment, there are still many unmet needs in the   community. In this Hemophilia News Today arti...
07/15/2025

Even with advances in treatment, there are still many unmet needs in the community. In this Hemophilia News Today article, Shellye Horowitz shares the challenges she has faced as a woman with mild hemophilia A, highlighting the constant self-advocacy required to get the right diagnosis and care.

Have you experienced similar challenges?

Read more: https://hemophilianewstoday.com/columns/why-factor-replacement-therapy-wasnt-working/

As a woman with hemophilia, columnist G Shellye Horowitz struggled to find answers as to why her factor replacement therapy wasn't helping.

To raise awareness about this important day of advocacy and representation, share this post with  . Together, we can emp...
04/17/2025

To raise awareness about this important day of advocacy and representation, share this post with .

Together, we can empower change for the future and for today!

Head to the World Federation of Hemophilia site to learn more: https://www.wfh.org/en/events/world-hemophilia-day

It’s   and we want to hear how YOU are raising awareness in your own community! Share your experience in the comments be...
02/28/2025

It’s and we want to hear how YOU are raising awareness in your own community! Share your experience in the comments below so that we can applaud your efforts. 👏👏 Then, share this post to your story to raise awareness about this important day of advocacy.

Get plugged into the Changing Hemophilia® community at www.changinghemophilia.com

© 2022 Novo Nordisk All rights reserved. US22HRBD00208 November 2022

09/29/2023

Terms of Use & Comment Guidelines

We’d like to be clear, direct, and up front about the restrictions within which the Changing Hemophilia® page must operate.

The Changing Hemophilia® page exists to bring together the community of people, from patients to caregivers to friends and relations, whose lives are affected by hemophilia, and to offer support and education through that community. Because the page is sponsored and owned by Novo Nordisk, a pharmaceutical company, it is governed by FDA regulations and other federal laws.

While it is the goal of the Changing Hemophilia® page to foster open communication and a candid exchange of ideas, stories, and sentiments, there is simply some content we are restricted from publishing, or allowing to be published, on the page. It is not our intention to censor our community members in any way; however, we must operate within the rules.

The following Commenting Guidelines explain the restrictions of this page. Thank you for your understanding and for ensuring that your comments fit within these guidelines. While Novo Nordisk reserves the right to remove any posting at its sole discretion, we are working to foster communication and candor; in this spirit, we will only remove comments that violate these guidelines. Please contact us via private message with any questions or concerns.

1. Product Mention. Please don’t reference the products of any pharmaceutical company, whether positively or negatively. Important regulations govern exactly what can be said about products within the context of this page—it’s better to just leave them out of the conversation.

2. Side Effects. Facebook is not the appropriate forum for reporting side effects of prescription drugs. So that we can best deal with the information, please report side effects to us by calling 1-800-727-6500, or directly to the FDA by visiting www.fda.gov/medwatch or calling 1-800-FDA-1088.

3. Links and Tags. While we do not endorse any page content other than our own, we must take care that all of it—including links to other pages and tags to other pages—is within the regulations that govern our page. Because we can’t take responsibility for the content on other websites, please do not post any links or tags on this page.

4. Vulgarity or Personal Attacks. The Changing Hemophilia® page is a community for all, without discrimination on the basis of ethnicity, race, religious affiliation, age, or gender orientation. It is a place of respect. We prohibit comments containing profanity or any hostile, harassing, or discriminatory language.

5. Medical Advice. While we appreciate the community’s desire to help one another, and while we encourage sharing experiences, please leave the dispensing of medical advice to the medical professionals—and even if you are a medical professional, please leave it to an individual’s health care practitioner. Medical advice can have serious implications. We are all different, with different health histories and concerns. A treatment that worked for you or someone you know won’t necessarily work for someone else. In the interest of keeping everyone safe, please don’t post specific information about treatments, techniques, therapies, medications, etc.

6. Off Topic. We’d like the Changing Hemophilia® page to be a forum for conversation and for sharing experiences, and in that regard, this is a nebulous area; however, comments occasionally arise that are clearly unrelated to the topic, or are spam, or are promotions for goods or services. These comments are not allowed on the page.

7. Miscellaneous. In the event that a comment does not fit into one of these categories but nonetheless is not suitable for the Changing Hemophilia® page, Novo Nordisk reserves the right to remove any posting at its sole discretion.

To raise awareness about this important day of advocacy and representation, share this post with  . Together, we can emp...
04/17/2023

To raise awareness about this important day of advocacy and representation, share this post with .

Together, we can empower change for the future and for today!

Head to the site to learn more: https://www.wfh.org/en/events/world-hemophilia-day

Address

800 Scudders Mill Road
Plainsboro, NJ
08536

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Changing Hemophilia® is a community for people whose lives are affected by hemophilia and rare bleeding disorders.

Our mission is to create connections, so people can learn from the experience of others and gain the inspiration to live a fuller life. We support special events and scholarship opportunities. "Like" us to get all the updates and help spread the word.

Changing Hemophilia® is proudly sponsored by Novo Nordisk Inc.

US19HRBD00082 | May 2019

Terms of Use & Comment Guidelines