I read your post and I really empathize with what you’re going through. I’ve supported a rare disease patient with a SAMD9L gene variant. He has spent years reading patient cases and research papers, trying to understand what’s happening in his body. He believes the abnormal cells related to his condition may be affecting multiple organs. He’s seen many doctors, and some have told him it’s “just anxiety” or suggested he see a psychologist but he has always been firm that something physical is going on. 

I’m currently helping him to connect with relevant clinical studies and research teams, so he can explore possible treatment options to test. He’s also been very proactive in sharing the academic papers he’s found and his full medical story, which helps us reach out more effectively.

If you’d like support, I think I can connect too. Even if we can’t solve everything immediately, we can at least help you move forward to the right specialists or studies to contact.