Bone Loss & The Weight of Silence

Holly is living with Gorham-Stout Disease smiling big at the Desert Botanical Garden in Queen Creek, AZ.

Living with Gorham–Stout disease means living with uncertainty in a body that doesn’t follow the rules. It’s a rare disease—so rare that many doctors never encounter it, and many systems aren’t built to recognize it at all. For me, it has meant bone loss, constant monitoring, and learning to coexist with a condition that can change everything without warning.

In two days, I will undergo full jaw reconstruction surgery. Writing that sentence doesn’t make it feel less heavy. This surgery isn’t cosmetic. It isn’t optional. It’s the result of a disease that literally causes bone to disappear. It’s about survival, function, and the hope of stability in a body that has spent too long being unstable.

Being disabled with a rare disease means living in a space most people never see. It’s the endless explaining. The medical gaslighting. The fear of losing access to care because your condition doesn’t fit neatly into policy language or budget spreadsheets. It’s watching programs like Medicaid be treated as expendable while knowing, personally, that they are the difference between life and collapse.

I am a disabled student advocate and nonprofit leader because I don’t have the luxury of silence. My body has made that clear. Rare disease has taught me that systems fail first—and hardest—the people who are already vulnerable. Disabled students are expected to persevere without adequate accommodations. Disabled adults are expected to justify their existence. And people with rare diseases are expected to be grateful for scraps of recognition, if we receive any at all.

This surgery comes at a time when so many disabled people are being told—explicitly or implicitly—that we cost too much, ask for too much, or matter too little. I reject that. My life is not a line item. My healthcare is not a favor. And my survival should never be political.

I am scared. I am human. Major surgery is never easy, and when you live with a rare disease, the risks carry extra weight. But I am also grounded in why I speak up. I do it for the students who don’t yet have the words. For the patients who are exhausted from fighting insurance battles while fighting their own bodies. For the disabled community that deserves care, truth, and dignity—not erasure.

Gorham–Stout disease has taken bone from my body, but it has not taken my voice. If anything, it has sharpened it.

As I go into this surgery, I carry hope alongside fear. Hope that reconstruction brings relief. Hope that healing is possible. Hope that telling my story helps someone else feel less alone—or pushes someone in power to listen more closely.

This is not about being inspirational. It’s about being real. Disabled lives are not tragedies. They are lives navigating systems that too often refuse to meet us halfway. I deserve care. Disabled people deserve care. And rare disease patients deserve to be seen—not only in moments of crisis, but in the policies and priorities that shape our futures.

In two days, my body will change again. My commitment to advocacy will not.