Rooted in the bleeding disorders community and lifted by love

I have vivid memories of visiting Grandma Jala. She lived in the little wooden house where she raised my dad and his three brothers after Grandpa died at a young age. The tiny house, worn by time, stories, joy, and sorrow, had a huge, adventure-filled yard. It had the flicker of fireflies, the buzzing of mosquitoes, and chigger bugs that left me with bites. It was pure magic.

When we arrived for a visit, my dad pulled out a tire swing from under the house. He tossed the thick rope over the large branch and tied it tight. I climbed on the swing, and with a big push from my dad, I held on tight, laughing all the way. I didn’t notice the film of dust or spider webs inside the tire or the black marks on my legs and clothes. It was great fun that I never wanted to end.

The tree that held my swing was a massive oak. The branches stretched wide like open arms, welcoming me to play. The tree was fun as there were nooks and crannies where a kid could perch, rest, and even doze in the warm sun. Many years have passed since my days of swinging and climbing. Several years ago, I drove near this place of my past, and the tree is still magnificent.

The bleeding disorders community reminds me of that massive oak tree.

Recommended Reading

March 31, 2025 News by Lindsey Shapiro, PhD

Fitusiran, now Qfitlia, approved by FDA for hemophilia A, B patients

The strength of our community tree

This community has deep roots, having weathered storms of uncertainty, pain, loss, and grief. It’s also celebrated treatment changes and victories. Its branches extend to every direction: patients, caregivers, clinicians, and advocates, each offering support, shade, and even resting places. It’s a community that holds us up when exhausted, lifts us when we’re weak and without hope, and reminds us that we’re not alone.

Becoming part of the bleeding disorders community after the birth of my first son with hemophilia was like holding on to the tire swing. Here I held on for support. I had the assurance that someone strong would tie the swing’s knot and that I wouldn’t fall. I held on, listened closely, asked questions, and looked up to those who were already walking this path of a bleeding disorder.

These community stories were like the branches of that mighty oak: steady, tested, and filled with wisdom. This community gave me the courage to keep going even when the winds gusted and the branches bent.

After almost 30 years in this community, I see myself as one of the branches. I’ve been blown around, splintered, and worn during the good and the bad. My journey has been shaped by my years of experience raising not just one, but a second son with hemophilia. I weathered storms I thought would never cease.

I can bend without breaking and stretch myself wide enough to offer a safe space for others to sit. I want those who are scared and entering this new community — a community they never knew existed — to know they can climb up, sit, and breathe with me and my friends.

I’ll never forget being the one climbing the tree to find rest. I still need to do that on occasion. But the sacredness of the shift from constantly climbing to being the one to offer others a hand up is one of the most fulfilling parts of my journey.

Just like my grandmother’s tree, which continues to stand strong, I’m part of something much larger. I’m part of a community rooted in strength, love, and connection. And like that oak, I hope to stand for years to come — weathered, welcoming, and unwavering, offering shelter and strength to those who need it most.

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.