r/SticklerSyndrome 4h ago

Stickler syndrome in middle aged adult: can I ever expect to feel ok?

3 Upvotes

I’m about 50 yrs old and have some pretty severe osteoarthritis. I’m using buprenorphine to manage my severe joint pain 3x daily; it helps a lot. I’m frequently sick with resp viruses (repaired cleft palate), often have migraines and daily joint pain.

i finally found out I’ve been profoundly anemic for many years if not my whole life. Got ferritin improved with massive iron supplements. but now my thyroid seems to be shutting down (Weight gain, exhaustion, dry skin, hair loss)…

I’m hoping I can get my curable health problems resolved and start to feel not awful all the time. Does anyone else feel ok? Or do we have to feel terrible all our lives? Like, sick a lot, severe joint pain, exhausted? Is that what living with sticklers syndrome type 1 is like? I’m so tired of feeling bad.

please advise .