We must talk about the long arc of chronic illness, not just the first part

Nobody warned me that aging with a bleeding disorder would feel like negotiating with a body that keeps changing the terms.

I have von Willebrand disease, hemophilia B, and Ehlers-Danlos syndrome (EDS). All are clinically “mild” for me, but together they form a triple diagnosis that looks more harrowing than mild. Each condition, on its own, carries enough complexity and uniqueness to stump a medical team. Together, they interact in ways that keep surprising me, and not pleasantly. Lately, the surprise has been with my lower spine.

EDS is a connective tissue disorder, which means the collagen that is supposed to hold joints stable simply does not work the way it should. For years, I managed this in the way many of us do — carefully, with a great deal of adaptation. But collagen does not improve with age. What once felt like manageable stiffness and the occasional flare has become a more constant conversation between me and my lower back.

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Getting older

A recent MRI of my lumbar spine revealed the consequences of this laxity. Scoliosis and slippage of vertebrae both backward and forward. Bulging disks, arthritis, stenosis, nerve compression. I am just beginning to understand what this means, but what makes this particularly complicated are my bleeding disorders.

A spine that is prone to instability and micro-trauma is a spine that bleeds into soft tissue. Treatment decisions — whether to pursue injections, procedures, or simply physical therapy — will require careful coordination between my hematologist and whoever is managing my spine at any given time. It won’t be straightforward. It rarely is.

At the recommendation of my EDS specialist, I am starting the Muldowney Protocol exercises, designed specifically for people with EDS to stabilize joints through careful, progressive strengthening. They help. But there is no protocol that fully reverses what decades of hypermobility do to a spine.

Aging with a bleeding disorder is not a conversation our community has had enough of. We talk often about children, diagnosis, the early years of treatment and advocacy. But the bleeding disorders community is aging, and the questions we face now are different.

When the heart becomes the crisis

I have known men with severe hemophilia who have had heart attacks. And what follows a heart attack is, for most patients, a protocol that involves anticoagulants and antiplatelet therapies — medications that are, by design, dangerous for someone whose blood already struggles to clot. The cardiologist needs to treat the heart. The hematologist needs to protect against catastrophic bleeding. These two imperatives can directly conflict, and the specialists do not always speak to each other as much as the situation demands.

I think about those men often. About the particular cruelty of a body that will not clot and a heart that has just thrown one. About what it means to age in a body that has always demanded more careful management, and to discover that the margin for error does not grow wider as you get older — it narrows.

This is what aging with a bleeding disorder looks like in practice. It is pain management appointments and the slow accumulation of secondary conditions that build on a foundation that was never solid to begin with. It is learning that a diagnosis you received at one stage of life will keep revealing new dimensions of itself at every stage that follows.

I do not write this to be discouraging. I write it because I believe deeply that our community deserves honesty about the long arc of these conditions, not just the early chapters. The more we talk about what it means to grow older with a bleeding disorder, the better prepared we all are when we get there.

And we are getting there. More of us, every year.

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 consult your physician or another qualified healthcare 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.