hi everyone, since there is a lot of people in this group i though id ask if anyone here has sapho syndrome? ir knows someone with it? i was recently diagnosed after 3 years of pain in my chest/shoulders/back and hips. i visited multiple drs and had lots of scans and tests and no one could figure out what was wrong untill i had a bone scan this yr.
its a chronic and very rare syndrome and apparently there maybe not even 100 people in australia with it. even if i mention it to a new dr thry dont know what im talking about as its so rare. would love to hear from anyone if you have it or know someone who does.
sapho syndrome
sapho syndrome
Posted in:
Self Care, Health & Wellbeing
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As the parent of a child with an extremely rare disorder, our best friend is Facebook groups.
Most disorders have private Facebook groups where people can connect to others from all over the world.
It’s been a huge relief to have others to connect to.