Why are there no medical specialists in connective tissue when it is what holds us together?
This burning question for EDS/HSD Awareness Month brought to you as part of Linda’s One-Liner Wednesday. Join us! Find out more here: https://lindaghill.com/2025/05/21/one-liner-wednesday-600/
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Joanne Corey 
Probably because they haven’t found a way to profit enough from it. Because so little of this is about care, and most of it is about profit, Sadly.
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I think it may be more cluelessness than profit. People with CTDs tend to have a lot of doctors treating them for various parts of their bodies, all without realizing that the reasons they may not respond to treatment as well is because of an underlying connective tissue disorder. The average time it takes to get diagnosed is 10-12 years.
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I had no idea. I agree with devon, it most likely has to do with profit margin. A ridiculous way for healthcare to behave.
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Most med schools spend almost no time educating their students on connective tissue so most doctors have no idea the role it plays in other problems. For example, most of the time irritable bowel syndrome is considered ideopathic, i.e. we don’t know what the heck is causing it. More recent research indicates that a lot of cases begin with connective tissue problems in the wall of the intestines that allow acids, bacteria, etc. to get into the wall and trigger symptoms. That’s why organizations like the Ehlers-Danlos Society are so important. They help to raise awareness and raise money for research.
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Always grateful when we have an organization willing to shine a light on those connections we don’t see ourselves. I sure would love to hear that med schools start recognizing the role connective tissues play.
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I’m hoping as more research is done that the role of connective tissue will be better appreciated by physicians in primary care and across all specialties. As our system is currently configured, it’s difficult for physicians to get out of their silos and work together to look at the unique person in front of them and see the full picture of their health.
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Thank you for asking this intelligent question. We need to study and understand the connections.
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I do appreciate the role of the Ehlers-Danlos Society in spearheading research and conferences internationally. The next issue is getting that information into the hands of all doctors so it reaches patient care. It reminds me of the story of stomach ulcer treatment, which changed radically after many decades when the role of h. pylori was discovered and made it out into the medical community at large.
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You sure know a lot of valuable and practical stuff. Thanks for spreading the message.
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It’s been strange. Because of my research, I often am more up on recent medical papers than the doctors I see. It’s a challenge because of the organization of our medical systems where specialists only deal with their body part and don’t want to hear about something beyond it. They also fall into expecting that my body will respond to treatment in the same way as someone with normal connective tissue. Working on it and hoping to get an understanding team together in the coming months…
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It is the challenge of this phase of your life. I know some of your doctors are benefiting from your information, at the very least, you are planting seeds for a more holistic, integrated approach. I hope and pray your research will help you get better, too. Healing energy on the way!
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Thanks, JoAnna! While I’m unaccustomed to this level of intensity getting care for myself – well, since my thirties when there was some personal health drama – I’ve had the situation of needing to do it with my elders and our younger generation. It’s all making more sense if viewed through the lens of connective tissue disorders. Genetics is powerful.
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I’m thankful that it’s more sense.
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