My first national bleeding disorder conference was in New Orleans in 1998. I was overwhelmed at the over 2,000 individuals in attendance.Â My son was two and the enormity of hemophilia hit me hard when I saw men in wheelchairs, using walkers, and not moving their limbs with ease. What in the world was really in store for him?
Several years later I heard of another national group, the Hemophilia Federation of America.Â A friend had told me they were a smaller “grassroots” organization, although I was not really sure what that meant. Someone said that their focus was for us to “never forget.”Â Again, I had no clue what that meant.
Flash forward eighteen plus years and I found myself in Las Vegas, Nevada at the annual HFA Symposium this past week.Â The organization has grown and provides support in so many different ways that I find helpful. They are not simply an organization that does not want us to forget-HFA wants to empower everyone living with a bleeding disorder and their families. Several in attendance commented that it was like a “family reunion” and I have to agree. I felt at home, with people who had walked very similar paths.Â I was home with people who really understood my challenges, grief, and triumphs. And it wasn’t even that I knew a lot of people personally, just being in the same space gave me comfort.
The theme for Symposium was “Together We Are Resilient,” which resonated with me deeply.Â It’s like the old Timex watch commercials that stated, “it takes a licking and keeps on ticking.” Those watches would be banged around, submerged in water, left in extreme temperatures and they never stopped.Â That’s our community in a nutshell! We endure devastating bleeds, joint damage, mobility challenges, hospital admissions, blood draws, ports, insurance companies…the list does not end. And for those us that are not affected we have to sit back and watch our loved ones scream in pain, help monitor their lengthy hospital stays, lift wheelchairs in and out of vehicles, and advocate at the top of our lungs when we can hardly speak another word.
It’s just what we do.
Sometimes I feel like I am going crazy when dealing with an issue relating to hemophilia for my boys.Â I want to scream at the top of my lungs, “Are you kidding me?Â This isn’t right!”Â That’s when I stop, take a breath, and realize that I am not alone. I am not the only mama warrior who has gone through something that wasn’t fair.Â HFA has done an amazing job of bringing our community together.Â They help us stay connected, keep us informed, educate us, and give us tools to use in fighting and advocating for our rights as individuals living with bleeding disorders. And they keep the memory of those we lost alive.
Cazandra lives with her husband Joe, and 19-year-old son, Julian, and 10-year-old son, Caeleb, in New Mexico.
*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.