How do you convince a dr. to even LOOK under the hood. Not just at the chassis. I FELT demeaned!!

Boy, I hear you and I bet many of our members can relate to what you shared, . It's so frustrating and demoralizing when you feel like doctors aren't truly listening to you and aren't interested in really getting to the root of what is going on. I can't offer better input than Donna, so I will just add my words of support and encouragement. You deserve to have good medical care than focuses on you as an individual, not just a body. You're not a car brought in for repairs after all!

I hope you can find a doctor who meets your needs and cares for you as a whole person!

Gentle Hugs, Erin, Team Member.

Hi , I can feel your frustration, and I'm sorry to know that your experience has led you here. I would empower you with this thought - you do not have to prove worthy of treatment - that is your right - any doctor who wants the pleasure of treating you must meet your criteria. Rarediseasesnetwork.org may be able to help you connect with a more receptive care team: https://www.rarediseasesnetwork.org/resources/patients-families
Please know we are here for support. Please keep in touch and let us know how you're doing. - Warmly, Donna (Team Member)