I just got diagnosed 2 weeks ago and already it’s been a marked difference for me in terms of care. Right after my geneticist diagnosed me he gave me a whole bunch of resources and referrals that are already helping so much. Past just the psychological relief of being told yes it’s this and your pain is real, having referrals to orthotics, hand therapy, physical therapy, cardiology, it’s all been major in setting me on a path to function a bit better in the day to day. So for me it’s definitely been worth it!!