05/15/2026
Why an hEDS diagnosis matters, even though there is no cure.
I’ve seen this before, why hunt down a diagnosis if you can’t cure it? No cure doesn’t equal no care.
Diagnosis with or any other diagnosis without a cure matters for so many reasons.
Here are my top 5.
1. Diagnosis lets a person become a patient.
They can have the same understanding, care and options as someone with more recognizable disorder. They can (at least a little) step into the role of being cared for and out of the role of researcher.
2. Diagnosis informs care plans
The goal isn’t always a cure, it’s a well informed care plan to reduce suffering.
This can mean preventative screenings, safer care in emergencies and surgeries, access to accommodations and specialists etc.
You go from looking like an unlucky person who seems to have issues with every bodily system, to someone following a recognizable pattern of your diagnosis.
3. Knowledge is power
Less random shots in the dark and more targeted approaches.
Whether medication, mobility aides, lifestyle changes or physical therapy: all options can be targeted to what is most likely to help improve your outcomes when you and your doctors know what to look for and what they are dealing with.
4. Acceptance
Allowing someone the information needed to move the stages of grief is a great kindness. It is much harder to do that, to know what the reality is we are accepting, without understanding the diagnosis.
*this does not mean accepting sub par care, accepting unnecessary suffering or giving up.
5. Community
When we find others who have walked a similar path, however horrible it may be, we realize we are not alone. It was never just us. No one here was being dramatic or weak or making things up.
We can also share in support. I’ve found communities sharing provider information, local resources and support and even offering up mobility aids.
Finding people that understand you without having to explain anything, can be immensely healing in of itself.
Cure or no cure…
We all deserve good care, understanding, support and belonging.