About The Bendy Belle

My life living with Ehlers-Danlos type III.  Ehlers-Danlos is a condition that effects the collagen in the body, there are several different types.  I have type III, or the hypermobility type.  All of my joints are hypermobile, meaning that I am prone to hyper-extension, sub-luxations, and dislocations of my joints.  People also have different degrees of hypermobility within this type, I am on the more severe end of the spectrum.  Ehlers-Danlos Syndrome is widely unknown, and I hope to spread some awareness about this syndrome.  Please feel free to ask any questions.

 

I do not provide medical advice or treatment. I am not a health care provider. It is important to realize that information provided on livingbendy.com is not meant as a replacement for proper care from a doctor, therapist, or other health care providers. Information provided on livingbendy,com is not a substitute for medical treatment or psychological care. It is vital that you talk with your health care providers regarding the diagnosis and treatment options for Ehlers-Danlos syndrome and related connective tissue disorders. Minors should consult with a parent or legal guardian when considering treatment and providers.

 

2 thoughts on “About The Bendy Belle

  1. First, I am looking for a rheumatologist in the Atlanta area who’s familiar with EDS. I’m in the process of filing for disability, and I’ve avoided getting an EDS diagnosis into my records, until now, hoping for some future treatment unobstructed by pre-existing condition causes. Unfortunately, it turns out I’m filing against an eligibility deadline, too. I have already been in contact with the EDNF, the local EDS support group, and my MD at Emory, without result. I would appreciate ANY guidance you can give, at your earliest convenience.

    Second, I cried the entire time I read your “…Face that EDS Gives Me” blog. It was far too familiar, in a way that I could never explain to people. Thank you for offering it up.

    Third, I’m sending a link to your blog to my EDS-affected family members. I think they will find they recognize themselves in you, as I do.

    Last, I am so sorry you have to deal with this painful and wearing disease, but I am so glad to find your voice. Thank you for speaking up.

    Sincerest regards,

    Sandra

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