When Max was younger, we had all the typical issues a child with hemophilia has: excessive bruising, bloody noses, and joint bleeds. I struggled to maintain health insurance, and as he aged, I struggled with navigating his infusions.
As we attended more hemophilia events throughout New England and the country, I learned more about the struggles of people with hemophilia around the world. Depending on where you live, the level of care is drastically different. In some places care is immediate and easily covered by that particular country’s healthcare system, while others don’t have access to clotting factors or medical facilities. It’s devastating to learn that today there are still many children who won’t live to adulthood because of uncontrolled bleeding.
As we all know, it’s difficult to see when your child is in pain and experiencing joint damage at such a young age. But I am grateful that Max was born in a place where medications were accessible when his knee was four times the normal size from a bleed. Although he’s suffered great pain, and is now facing multiple injections into his hip until the day he can have it replaced, it is a gift to live in a country where he has factor and doctors to help him.
The hemophilia community supports one another. In the world of social media and virtual friendships, we are connected with people from across the globe. We are able to mourn their losses and share in their successes. We are able to grow together as a global community.
April 17th is World Hemophilia Day. It is an opportunity for our global community to join hands, spread education and awareness. All around the world you’ll see bridges and buildings lit up with a red glow to honor the men and women who live with bleeding disorders. Facebook profile pictures will change. Many will wear red to recognize the day. Please join Max and myself as we honor our past brothers and sisters, and as we cherish those that have more hope than ever of living long, healthy lives.
The world of hemophilia is vast and varied although some things are true no matter where you are:
- Once the damage is done to a joint, there’s no going back;
- There is no cure;
- You don’t outgrow hemophilia;
- We are still reliant on blood based or bio manufactured products to try to maintain some sort of normalcy that still require frequent intravenous treatments.
Take a moment to share in our successes and be grateful that you are fortunate enough to live in the United States.
Maryann and her 21 year old son, Max, live in New Hampshire.
*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.