A Stanford Journey

I recently visited with a sarcoidosis research team at Stanford University Hospital. The goal of my trip was to learn more about how the team treats patients with sarcoid, and to see if they had feedback for our current approach.

The nice part was in their opinion, we are doing everything they would advise in an attempt to manage a complicated case. Unfortunately, there is no secret sauce they could share to help alter the trajectory of my care.

The Stanford team was great to work with; they were proactive in ensuring all records were visible on their side, and also took time to ask qualifying questions ahead of my visit. For the appointment itself, I felt heard and seen by the entire team.

For those of us managing or caring for someone with a chronic illness, being seen and heard, even if no solution exists is all we ask. Stanford more than delivered.

They validated the fact that I have an incredibly rare presentation of an incredibly rare disease. They did suggest a long course of steroids in an attempt to determine if it’s my immune system or a separate inflammatory process causing sarcoid to remain active in my body.

Fellow diabetics are well aware of how difficult steroids are, as it drastically limits the effectiveness of insulin. I will be writing more about how we’ve managed the process in case others face the same prospect.

While the Stanford trip did not glean any dramatically new care plans, they treated me in a respectful and collaborative manner, and I would recommend them to anyone considering care from their rheumatology team.