It's Meet a Member Wednesday and today we’re meeting Danaya B. Danaya lives in San Antonio,
TX with her fiancé. She is a very talented makeup artist and coaches a local
cheer and dance team. Danaya has never let XLH stop her from accomplishing her
dreams. At the young age of 10, she earned her black belt in karate. She
started having corrective surgeries when she was 8. After her last surgery in
2011, her mobility was hindered and she has been using her wheelchair and
scooter to help her get around. Danaya traveled to San Francisco last year to
sit on an XLH panel, and considers this her favorite travel experience because
she met what she calls her “forever ladies” (#waddletribe).
Danaya was diagnosed with XLH at 2 years old, through
bloodwork. Her father is believed to be a spontaneous case and passed it to
Danaya and her younger sister. Danaya has been on burosumab for 3 years. She
does a lot of stretching and simple exercises to help alleviate pain. She also
rotates ice and heat and says this is a must!
Danaya discovered the XLH Network after her 4th
surgery and then became even more involved 3 years later when starting the
burosumab trial. When asked what the Network means to Danaya and her family,
she says, “It has meant so much to me to know there are others out there and
I’m not alone. I now know a whole network of people who understand what I’m
going through. This has truly boosted my self-esteem and confidence.”
