If you’re living with hemophilia, you’re already aware of the impact the condition can have on your life — but chances are strong that other people in your orbit don’t know as much as they could about the disease. That’s why it’s important to raise awareness for the medical condition — particularly in March, which is Bleeding Disorders Awareness Month.
It can be hard when your friends and family don’t know what you’re going through. It can also feel difficult to say no to loved ones who don’t understand your situation. You might worry about how your relationships will be affected.
Raising awareness about hemophilia is important so your friends, family, and acquaintances can better understand how to support you.
Before you can create public awareness by sharing information with others, it’s a good idea to understand the specifics about hemophilia. Learn more about hemophilia’s causes, signs and symptoms, and treatment options.
Hemophilia is a rare bleeding disorder usually caused by certain genes. Most often, hemophilia genes are passed down in families, although some hemophilia cases are the result of a random genetic mutation. Because of the way the gene for hemophilia is inherited, the majority of people with hemophilia are boys and men.
Hemophilia is a chronic condition with no cure, but it can be effectively treated in most people. Uncontrolled bleeding is the most common symptom of hemophilia, but it can also cause pain, fatigue, depression, and joint damage that interferes with mobility. On average, people with hemophilia have similar life spans as people without hemophilia.
After you’re armed with information about hemophilia, you can share it with others. The fastest and least expensive way for this kind of advocacy is through social media. You can post information about hemophilia, share details about the condition, and join communities of other people who are also working to raise awareness about hemophilia.
To ensure your messages on social media reach as many people as possible, consider using an appropriate hemophilia-related hashtag, like #HemophiliaAwareness or #BleedingDisorderAwareness. This way, your posts will be seen by more people who have the same interests, and they’re more likely to share and comment.
Social media helps raise awareness for the condition, and it also allows other people with hemophilia to realize they aren’t alone. Joining a hemophilia community on social media, such as MyHemophiliaTeam, can also help you connect with others.
Another way to raise awareness about hemophilia is to participate in an activity dedicated to the cause. You can walk or run for hemophilia, go bowling, participate in fundraising activities, or even create a unique event that works for your interests. You can help other people understand more about hemophilia while having fun and raising money for the cause.
If you are able, you can also donate (and encourage others to donate) to the National Hemophilia Foundation to support bleeding disorder advocacy and research.
In addition, remember to engage in self-care. It’s emotionally taxing to educate others about your lived experiences, so know your limits and accept when to put your mental well-being first.
On MyHemophiliaTeam, more than 6,000 people living with hemophilia come together to ask questions, give advice, and share their stories with others who understand life with the condition.
Share your hemophilia journey in the comments below, or start a conversation by posting on your Activities page.