The power of reconnecting with the bleeding disorders community
Our New Mexico chapter recently gathered for the first time in years
“It’s been too long.”
“Oh my goodness, your kids have grown!”
“It’s been forever since we’ve seen each other.”
These sentiments resonated as members of Sangre de Oro, the Bleeding Disorder Foundation of New Mexico, gathered for Family Education Weekend March 21-23 in Albuquerque. While many chapters around the country host annual meetings, Sangre de Oro has not held a statewide event in more than five years.
The pandemic halted in-person meetings and summer camps. The absence of these events was more than an inconvenience; it was a huge loss for the community. Another reason events couldn’t be held was a lack of involvement from volunteers. This once tightly woven community was hanging on by a thread. With the community’s connection not visible, it was easy for many people — especially newly diagnosed families — to feel alone.
Fortunately, a dedicated group of volunteers is working to reestablish this chapter as an integral part of the bleeding disorders culture here in New Mexico.
Reuniting with old friends
Hemophilia camp was more than a summer tradition; it was a safe place where campers were seen, understood, and heard. In this space, kids with bleeding disorders connected with others who understood their reality. Campers could find the courage and self-confidence to self-infuse, go zip-lining, laugh, and play with their entire hearts. And with medical staff present, they were safe, which comforted parents. We knew our kids were in great hands.
My youngest son, Caeleb, is 19 years old and lives with severe hemophilia A. When he arrived at last weekend’s conference, his dad witnessed Caeleb reunite with one of his camp friends. This tall, handsome young man saw Caeleb, raced over, and wrapped him in a big bear hug. My husband was choked up seeing these two college kids embrace without hesitation. Their smiles lit up the room, and laughter and joy ensued as they rekindled their friendship after years apart.
Those camp relationships and memories are ingrained into my son and the many other children and young adults that participated. Such friendships are an essential part of the bleeding disorders journey. When Caeleb reunited with his camp friend, it was like not a day had passed.
The Sangre de Oro chapter’s homecoming was not only an educational event, but also a powerful reminder of why we show up and stay involved. We aren’t just a community; we’re a family, and each of us is an integral part of it.
For those reading, I have a challenge: Reach out to a friend in the bleeding disorders community that you haven’t seen or spoken to in a while. Call, text, or connect via social media.
It’s incredible how reconnecting with your community can enhance your life.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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