Do you use TikTok to get information about bleeding disorders? If so, you’ve got plenty of company. A survey of 2,000 Americans conducted by the prescription savings company CharityRx found that 1 in 5 Americans turn to TikTok for advice before going to their physician.
Sharing and receiving health advice on social media can be risky, but it can also be a powerful way to connect with others who understand what you’re going through. We talked with two people in the bleeding disorders community who post on TikTok to share their knowledge and experiences and spread awareness about bleeding disorders myths and facts.
Kaitlin Bartholomew — @kaitlinmarie788 (Hemophilia Mama)
What inspired you to start sharing your family’s bleeding disorder journey on TikTok?
When my son was diagnosed with severe hemophilia A at just 5 days old with no family history, I was terrified. Google made it all seem so scary. But as he grew, I realized most of those fears I read on Google never came true. Having children with hemophilia has been nothing like I imagined — in the best way. During the pandemic, I started sharing our journey on TikTok to help other parents facing that same fear. I wanted them to see that life with hemophilia can still be full of joy, strength, and hope. And along the way, I’ve been able to spread a whole lot of awareness, too.
Was there a moment when you realized your content was really making an impact?
One of my videos went viral with 12.4 million views and my account took off. So many people commented and privately messaged me about how I gave them hope that they too can live a normal life and they were glad I shared my experiences.
“How do your kids feel about being part of your TikTok videos, and do you think that might change as they get older?”
My kids are 7 and 3 years old and aren’t embarrassed of having a bleeding disorder — at least at this age — and enjoy making videos with me. If that changes in the future, I will honor their wishes if they do not want me to share personal details about their health. I would probably shift my content toward something else related to bleeding disorders.
What kinds of content do your followers engage with most — education, humor, daily life?
My followers engage mainly with my daily life and educational videos. Those who come across my videos who are not familiar with hemophilia are usually intrigued by it, like to ask a lot of questions, and learn about it.
What do you wish more people understood about hemophilia?
I wish people understood that hemophilia is not as scary as it used to be. With today’s treatment options, it is very manageable. There are instances like having an inhibitor that can complicate things, but overall people with hemophilia live pretty normal lives and accomplish great things. Every year I have to meet with both my sons’ teachers and promise them that they do not have to bubble wrap them or helicopter over them.
Have you connected with others in the bleeding disorders community through TikTok? How has that shaped your experience?
I have connected with so many hemophilia moms on TikTok, and it makes my heart happy that I can help ease their worries and fears. I actually met a hemophilia mom who lived 15 minutes away from me thanks to TikTok, and she ended up becoming my best friend.
What has been the most challenging part of being an advocate on a public platform?
I would say it’s not being able to help everyone. There are people in other countries who do not have the same access to treatment as we do in the United States, and they message me begging for factor products for their child or themselves and I can’t help them. I can’t imagine how scary that would be.
Have you ever had to respond to misinformation or negativity online? If so, how did you handle it?
The only negativity I’ve experienced online has been around my decision to have a second child, knowing I carry the hemophilia gene. I understand that these comments often come from a place of misunderstanding, so I responded with a video to help educate. To outsiders, infusions might seem traumatic. But for my kids, this is just part of their normal routine. It takes only a few minutes once a week, and because of it, they’re able to live full, active lives just like other kids. Hemophilia today is not what it used to be.
How has sharing your family’s story helped you?
Having children with a rare disorder can feel very isolating at times. My “normal” mom friends don’t understand the clinic visits, hospital stays, port infections, learning to stick your child, dealing with specialty pharmacies, prior authorizations, or making major medical decisions while praying you’ve chosen the right path. It’s all so mentally and emotionally exhausting. Being able to share our experiences and support other families going through the same thing has been healing for me. I’ve connected with some truly amazing people. Even if they live states away, they still feel like family.
What advice would you give to someone with a bleeding disorder who wants to engage with others online but feels nervous about posting?
My advice? Do it anyway! You never know who needs to hear your story. You could even meet your best friend, like I did on TikTok. The more support and connection you have, the easier it is to navigate life. Don’t be afraid to put yourself out there.
Maya Bloomberg — @thehemenp (TheHemeNP)
What inspired you to start a TikTok account?
I am a hematology nurse practitioner, and during the pandemic, there was so much health misinformation out there. I wanted to become a hub for patients to get reliable, easy-to-understand information that would empower them to become their own biggest advocates. I also wanted to make conversations about sickle cell and bleeding disorders more approachable. Creating @theHemeNP was a marriage of my knack for explaining complex topics in simple terms with my creative and artistic side. I spend a lot of time educating, but I also know how intimidating and isolating these conditions can feel. Social media gave me a space to blend education with real life — to show that health isn’t just about lab values or hospital visits. It’s about how we live day to day. I wanted patients, families, and even providers to see that healing can be both scientific and human.
Was there a moment when you realized your content on TikTok was really making an impact?
I started getting messages from people who said a video helped them finally understand their condition or gave them words to explain how they felt to family or providers. Others said they simply felt seen in a way they hadn’t before. That’s when I realized these short clips weren’t just content — they were connection.
What kinds of content do your followers engage with most — education, humor, daily life?
Educational videos — like explaining how stress impacts the body or breaking down medical terms — get a lot of attention because they make science less overwhelming. But people also respond deeply to the more human moments — parenting challenges, quick grounding practices, or even sharing when I get triggered but regulate quickly. That blend of expertise and authenticity is what resonates most.
Have you connected with others in the bleeding disorders community through TikTok? How has that shaped your experience?
Social media has allowed me to connect with patients, advocates, and families far beyond my clinic. It’s shifted my role from one-on-one visits to being part of a larger dialogue. Hearing their stories — their struggles and their strengths — reminds me why advocacy matters and keeps me grounded in the bigger picture. I attended the World Federation of Hemophilia’s 2024 World Congress, and a woman from Iran recognized me from social media and highlighted how much the information has helped her care for her son, and even herself. Those unsolicited interactions confirm my “why.”
Have you had to respond to misinformation or negativity on TikTok? If so, how did you handle it?
Yes, and it comes with the territory when you share health content online. With misinformation, I focus on responding respectfully and backing it up with both science and compassion. I try to say: “Here’s what research shows, and here’s why it matters for you.” When it comes to negativity, I remind myself that it often comes from fear, frustration, or misunderstanding. I no longer take things personally, understanding that people are projecting their own insecurities and limitations, and it is much easier to do so sitting behind a computer screen. Meeting it with calm and empathy is more powerful than defensiveness.
What advice would you give to someone with a bleeding disorder who wants to engage with others online but feels nervous about posting?
Start small. You don’t have to share your whole story all at once. Maybe begin with something that feels safe — a daily tip, a piece of your experience, or even just sharing someone else’s resource you found helpful. And remember: Your story has value. Someone out there is waiting to hear exactly what you have to say. Don’t worry about perfection. What resonates most online is authenticity.