I would just like to introduce myself I have EDS from my father Chiari1 probably from my mother who had Spina Bifida and Psoriasis! My Dads side are all bendy my mother's side aren't but we have a very long history of Psorasis and infertilitly past present and future. I have EDS Chiari 1 Sjogrens Syndrome, SLE, Hypothyroid, PCOS, low BP, normal heart Lupus and SS neuropathies, and I'm 68 years old and Beighton 9!

5 Replies

  • Hi Pam, welcome!

    I'm Claire and I have Chari1, Hyper mobility Syndrome, lowbloodv pressure also, Fibromyalgia, IBS and Plantar Faciitis with Enthesopathy, also have an optic nerve problem that him waiting to find out what's going on.

    How are you coping with everything? I'm struggling? X

  • Hi. How did you get diagnosed with chiari. I have eds, pots and low bp plus neurological symptoms and it has been suggested I could have a chiari malformation. Did it help being diagnosed. Kate

  • My middle son,me and kids have Eds,has a chiari found and diagnosed via an Mri scan.The rest of us don't.He does suffer with headaches and migraines because of this.They Mri him on a year to year basis to see any changes whilst he is still growing.It helped them take his debilitating headaches seriously and he is on daily meds for them.It causes him a lot of neck aches aswell.

  • Hi Pam.

    The Eds seems to have come from both sides although neither mom or dad were made aware or diagnosed.

    Moms side very bendy,clumsy,headaches etc plus thyroid dysfunction throughout.Dads side vascular and easy breaking of bones plus skin and breathing complications.There was a possibility of Mar fans but he died young and medical records were lost before mine and kids diagnosis.

    I have Sle,Ra,Eds,sjogrens,Fibro,Crps plus others.

    It does seem to come as a package deal with some families.

    Hope you're doing ok .

    Nice to meet you.

  • Hello glad you posted 👏👍👌...we have stuff in common, to some degree...I read your thread & was inspired to introduce myself too 🤗

    🍀 Coco

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