Do you think SAPHO Syndrome is hereditary

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  • "?" I don't know. My dad's family was right from Italy he was first generation here. So possibly. My mom has had 2 hip replacements, 1 knee and she is waiting for a shoulder...has CPPD. I was told it's unrelated to me. But who knows if that's correct. My daughter has Crohn's and I've seen in research that is the same type of autoimmune disease and they usually go hand-in-hand. It makes me so sad to think that my genetics play a role in her being so sick. My mom's side of the family has a lot of arthritis I don't know if anybody's tested positive for RA.

  • Tomi, what is CPPD?

  • I think maybe not SAPHO, but other disorders that make up SAPHO.

  • I'm still awaiting results, I joined the group when I went to NIH to be part of an Adult Onset Still's Disease study. Once there I no longer met the Yamaguchi criteria for Still's. But they immediately noticed how bad my hands and feet are with Pustular disease and I was in full flare of Hidraderitis Suppurativa. That's when they all said SAPHO Syndrome is a fit and wanted more tests. Like I said I'm waiting on their definite diagnosis, and if it is SAPHO Syndrome, I'm going into the Protocol study for SAPHO Syndrome and high doses of Kineret.

    I will definitely ask if they are close to genome markers and genetics on this. I am from German on my father's side and my mother is Cherokee and Pennsylvania Dutch (ya, I know, I've heard it all).

    They also are working with my GI Dr to see if I am also misdiagnosed and actually have Chron's Disease which they said is very common with SAPHO. Hope that helps and as I learn more, I'll share as well.

  • Calcium pyrophosphate dihydrate disease (CPPDdisease), also referred as pyrophosphate arthropathy and perhaps confusingly as pseudogout, is common, especially in the elderly, and is characterised by the deposition of calcium pyrophosphate in soft tissues and cartilage.

  • In my moms side of the family there are many auto immune disorders: ulcerative colitis, Crohn's disease, lupus, sarcoidosis and RA. There is definitely a hereditary component.

  • I have RA and fibromyalgia on my mom's side and RA on my dad's side. My son has psoriasis. I'm sure if asked cousins, there'd be more.

  • Xxxxxxx Yzzzzzz it's heartbreaking to know that my daughter who will turn 1 next month may have to deal with this one day. I got diagnosed shortly after my 30th birthday. But in a way, it's comforting to know there's sympathy and support in the family too. I guess that's just life.

  • I'm Italian Irish and have a sister and a mom with RA.

  • All my symptoms match what my dad has!!!! I keep telling him I'm sure he has SAPHO! X

  • No history of anything on either of my parents side

  • I'm of Chinese descent and my grandma had Rheumatoid Arthritis.

  • My mom has spondylosis.She also has osteoporosis and COPD, which is an airways disease. My older sister was diagnosed with arthritis in her spine a few years before she passed away. X