While the rest of the world is debating whether a dress is black and blue or gold and white, one thing I know for certain is that my son, Thomas, has been black and blue many times over the last eleven years. Do you think the world understands why?
You might remember HFA’s Hemophilia Awareness Month campaign over the last two years where we shared a fact a day on the HFA Facebook page. You can then use your social media accounts to teach your friends and followers about a rare disorder that means something to you. I personally share that fact a day from HFA each March with the hope of a viral sensation and whirlwind of information about hemophilia being spread globally. If each of us can share these facts each day, we can really increase awareness of what our children face.Â It’s a simple way to take action and be involved with a click of a share button from your phone, tablet or computer.Â It’s a way for us, collectively as a community, to stand up and be loud and proud about our community.
As a mom, I want to teach others about bleeding disorders. The more people that know about my son’s condition, about his struggles and triumphs, the more that understand rare conditions. When we do our part to spread awareness, the burden of fear I have for my son’s independence is lessened.
Remember, this month is for:
- the little boys with bumps on their foreheads before a school picture, and who have bruises all over their shins and elbows.
- the little girls, who had nosebleeds, awful bruising and trouble with their monthly cycle all throughout childhood, without a proper diagnosis for all those years.
- the siblings of a bleeder, for you struggle too, and far too often your needs are set aside.
- the families who lost a family member due to Hepatitis or HIV/AIDS, for your loss was unnecessary and your family member is greatly missed in this community.
- the guys with joint damage; it certainly is not a limp, and you guys have the most swagger of all!
- all the hemo dads, who put on brave face, but worry for their families, and are a source of strength for their families.
- for my fellow hemo moms – the fiercest group of women I’ve ever met – you are the mama bears, protecting their families against unknowledgeable medical professionals, insurance companies and watching your babies like hawks so that they can lead safe lives.
- the entire bleeding disorders community – we stand beside each other in the good and bad times, offering a helping hand or shoulder to cry on when times are tough; a hemo friend will always have your back and offer support.
- those who are not directly affected by hemophilia or another bleeding disorder and is an opportunity to learn more about bleeding disorders and our community.
The hemophilia community is the absolute BEST. I’m thankful for your love and support. I can call or text you to complain. I can count on a blood brother to make Thomas smile and our blood sisters who do, in fact, know what it’s like to bleed. This is a community who knows how to rally around a call to action. If we had to have a chronic illness in our family, I’m glad it’s hemophilia: our community makes us stronger and helps us to overcome the challenges we face.
Here’s an opportunity for us to show the world our true colors – when we band together, we can change the world. Let’s turn the Internet a true black and blue – with a month of facts about bleeding disorders.
Sonji lives with her husband, Nathan, and three children Nora (13), Thomas, (11), & Natalie (9) in Colorado.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.