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Patients Castleman disease
Did you have a say in your CD treatment?
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Courtney_J
Community managerGood advisor
@friedegg Hello friedegg, thank you for starting this discussion. I think this can unfortunately be a common experience among patients with chronic illness. Many feel they have no say in their treatment and are only told what to do or take. Let me tag a few members who may have an opinion on this!
Hello everyone, I hope you are doing well!
What has been your experience with your doctors and medical team regarding your treatment? Do you feel that you had a say in your choice of treatment? Did they give you a say in what medicines you should take or treatments you should undergo?
@PennyLane @Jurdie @Caski33 @Sashvin @Wellemma @Sarahjane79 @LukeIan @RhettB
Feel free to share your thoughts and experiences here!
Take care,
Courtney
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Courtney_J, Community Manager, Carenity UK
RhettB
Good advisor
I think in my and my brother's experience, the thing with CD being so rare and the treatments being still relatively experimental and there not being a lot of information out there, we had no choice but to follow the doctors' orders. We weren't and still aren't in a place to be able to really offer an opinion. Surgery wasn't an option in our case and obviously my brother being young, he wanted to absolutely fight the disease. So yes, beyond saying "yes let's do the treatment" we didn't really have a say, I suppose. I obviously can't speak for others, but I think it's not uncommon with rare diseases. Hopefully as time passes and more treatments are developed and approved we'll all be more informed and in a place to have more of a say.
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friedegg
Good advisor
Hello all, long time no see. I've been away a bit dealing with some personal things, but I'm glad to be back.
I was wondering the other day... Did you all have a say in your choice of treatment?
I feel like doctors just tell us what is going to "cure" us, but never try to give us a chance to understand for ourselves about what we are going to take and whether we want that or something else?
Am I the only one who feels this way?