Should special precautions be taken patients with Ehlers-Danlos syndrome receiving radiation therapy?

Not all EDS is the same. Most commonly, an EDS patient these days is a clinically diagnosed patient with hypermobile joints, possibly stretchy skin, and possibly chronic pain syndrome. That is a very different picture from vascular EDS with a COL3A1 mutation, which is rare and would have the extremely fragile vascularity discussed.

Limited data suggest that the hypermobile EDS patients are likely to tolerate radiation similarly to the general population.

While data is also limited for radiation ...

Interesting question, and one that a former resident of mine had proposed a few months back.

I am not aware of any contraindication to RT with EDS. Unlike scleroderma, it is not an autoimmune connective tissue disorder.

That it's not an autoimmune disorder is neither here nor there; it's a question of the integrity of the vasculature after RT. Which isn't to say I know of any solid evidence, but it's a very good question and something to consider with the patients. I did find this interesting presentation.

To my knowledge, with all the caveats of the limited data in this setting, the most concerning side effect I've seen in patients with EDS non-vascular subtypes treated with RT is a systemic pain flare (joints, skin, etc). Gabapentin, SNRIs, and antihistamines, as well as non-pharmacological approaches including acupuncture and heat therapy, are the most helpful to mitigate this. It can be difficult to find a single "specialist" to help you manage EDS throughout RT and follow-up, but if you're ab...

Does anyone have experience with SBRT for a patient with vascular Ehlers-Danlos Syndrome (vEDS type IV)? The patient has a history of vascular complications. Urologists prefer nonoperative management for an enlarging 3.7 cm renal mass consistent with RCC. IR is cautious about cryotherapy. Is SBRT reasonable?