Aging makes EDS feel more progressive than it is

My last column on my Ehlers-Danlos syndrome (EDS) pain sparked many comments, and one of the most interesting discussions was about whether EDS is progressive.

I’m going to share why I say it’s not, but also why I understand those who believe it is.

When I said that EDS generally isn’t progressive, I was referring to the actual process that our bodies don’t do well: creating quality collagen. To my understanding, at least, the quality of the collagen we produce doesn’t weaken as we get older. Instead, the problem is that we never had the ability to make collagen at the same level as a typical person, not from our birth. From that perspective, EDS doesn’t get worse as we get older; our collagen has simply continued to be troubled.

Recommended Reading

July 25, 2025 News by Lila Levinson, PhD

hEDS pain can be widespread and also affect mental health of patients

When age becomes a factor

Age becomes a factor because the problems caused by poor-quality collagen can add up over time, such as an earlier onset of arthritis and joint damage that can, in turn, cause increased pain. Muscles weaken as we get older, which can make our already unstable joints even more so.

While I don’t think there’s an official diagnosis in my medical file, many physical therapists have told me I likely have arthritis in my shoulder and my knees because of years of walking incorrectly, which was caused by EDS. I suspect that, in time, general wear-and-tear arthritis related to aging will only increase, worsening my pain. In that sense, I agree that EDS could absolutely be seen as progressive as we age.

Overall, I suspect there’s no right or wrong answer about whether EDS itself is progressive, especially as it can vary by type. I can see the arguments on both sides. It’s another great example of the differences people with EDS experience. Even though we share one umbrella diagnosis, the day-to-day reality of living with EDS can vary dramatically depending on each person’s EDS type, severity, individual symptoms, and life experiences.

Despite our different perspectives and experiences, or perhaps because of them, I typically find the readers of my columns to be incredibly genuine and kind. Thank you for that! Reading your comments often makes me feel as if I have a whole community of warriors who support me every day, even though we don’t know each other.

While we may experience EDS differently, we share common ground in managing a chronic disorder that causes pain and discomfort. We can understand each other, and that helps create a supportive and uplifting EDS community.

Note: Ehlers-Danlos News 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 Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.