Wow, it’s the end of the year and the end of a decade!
I am not leaving this decade the way I began. My decade began with a 7-year-old son with severe hemophilia A, who I wouldn’t allow to play recreational sports. I was pregnant with twins, one being a boy, unsure if I was having another son with hemophilia. As I reflect on the Hemo Mom I was 10 years ago, I realize that this past decade has been full of so many advancements in hemophilia. We have seen advancements in not only the products available, but in an increase in choice of products.Â The greatest development of all is families now feel a part of the larger bleeding disorder community through social media.
If a psychic told me 10 years ago my two sons would be playing varsity basketball and flag football, I would have asked for my money back and yelled, “FRAUD!” Clearly, that psychic’s extrasensory perception missed the fact that I had two sons with severe hemophilia A! Today, I would have to go find that psychic and beg for their forgiveness and another reading!
Of course, over more than a decade ago, everyone talked about, “one day there will be a cure for hemophilia.” I neverthought about the “baby steps” we would go through in getting to a cure, such as long acting factor or a therapeutic antibody that would improve the quality of our life for someone with hemophilia. I was talking to a Hemo Mom whose child is ready to start a prophylactic treatment and I was telling her my story of learning how to infuse a port. Because of new treatment options she will not have that experience.Â It was mind blowing to realize, prayerfully, that she gets to skip the phase of having three people hold down her child so her child can get that Huber needle through the port or struggling to find a vein three times a week.
Ten years , “Infusing Love” blog didn’t exist. Connecting on social media to other Hemo Moms was not an everyday thing – it is now available through bleeding disorder Facebook groups, now broken down into so many sub-groups. If you had a worry or a question, you waited to ask your hematologist, at the annual chapter meeting or you tried to research it yourself. There was no one to vent to and very few people were sharing their stories online. Now, a new mom can post a question, “Will my son ever play a sport?” Within minutes, you will have other moms post pictures of their children playing sports and advice and how great they are doing. Social media can be good or bad, however, it makes you feel a part of this bleeding community that spreads outside of the United States. No longer are Hemo Moms alone to figure it out. Besides this blog, you have so many people out there sharing their story and building connections and friendships.
I think one of the most important things social media has done for the bleeding disorder community in the past 10 years is improve and elevate advocacy. HFA and NHF has a quick and direct line to our community to ask for help in protecting our healthcare. It’s crazy that 10 years ago we were fighting to get the Affordable Care Act passed to remove the ability of health care insurers to place yearly maximums on essential services and 10 years later we still must stand guard to make sure we don’t lose it. We need to make sure that all our great “baby steps” to the cure are protected.Â Also, I don’t think the cure will be cheap!
Next year we will have new CEOs and leadership in place for HFA and NHF. This leadership will move us into the next decade of our bleeding disorder community that seems very promising. However, as a community we must keep advocacy, education and patient safety in the forefront. I myself am busy with my kids’ sports activities and everyone living a “normal” life, however we still must stay active in the bleeding disorder community. It’s our community for life, once you’re in you’re in!
I wish all my Hemo Moms Happy New Year and let the advancements in our bleeding disorder community continue to roll into the next decade!
Lovee lives in South Carolina with her husband, Charles, and her children, MaRee’, Marques, Laithan and Layla.
*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.