Anyone else here with Elhers Danos syndrome??

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Whateverittakes
Whateverittakes Member Posts: 43
edited August 2018 in IDC (Invasive Ductal Carcinoma)

Is it anyone else here with EDS? I am struggling trying to find someone else with it. I am having major problems healing and need some tips from another fellow survivor with EDS any imput would be greatly appreciated!! Thank you, SA

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited August 2018

    Hi WhateverItTakes --

    I do not have EDS but am familiar with it since some of my specialists throughout my life thought I might eventually develop it. I have battled Late Stage Lyme Disease and ME/CFS for years, beginning as a teenager. I feel your pain and sympathize with hoping someone else out there has your specific complicating chronic illness along with BC. I'm at that point too, as I wonder how my many chronic illnesses/immune system/connective tissue disorders on top of the ME/CFS & Lyme. It's scary to think about treatment and surgery and healing and wonder how those of with multiple medical issues on top of the BC will fair.

    I'm so sorry you are having problems healing. I wish I knew something that would help in your situation but I don't, that doesn't stop me from sending you healing vibes and tons of support. Hopefully someone will stop by that also has EDS as you do and give you the tips you are searching for.

    I'm guessing you have a specialist for your EDS - what do they suggest? I'm sure they must have had experience with BC patients or have contacts with those in the medical field that do?

    Have you tried asking your surgeon or your BC team about searching out help for you from EDS specialists?

    I really think they should be working hard on your behalf to help you find the best ways for your body to heal.

    Fingers crossed for you!

    Sending healing and hugs!

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  • Whateverittakes
    Whateverittakes Member Posts: 43
    edited August 2018

    Hello!! We do have some things in common, I have chiari malformation 1 which gave me CFS,ME, EDS, POTS, IDC BC, Raynaud's,fibro, seziures,sleep disorders etc the list goes on and on. My genetics test was so messed up they concurred with varient issues. I have to see a specialist. I've seen the top EDS Drs, all them say more sun light & vitamin C. It's no treatments nor cures just PT for prevention. I'm at a loss. I have asked My GS to seek out a new EDS Dr in hopes of helping me. I've always been hypermobilty all my life, never had blood clots or issues with my skin. Not sure If. You have seen my previous post but since June I've had 6 surgeries. 1st BMX double with nipple and skin sparring, left nipple didn't survive got infected removed it then it busted wide open the glue or steristrips couldn't hold together. Couldn't fit a drain so it leaked out of my incision. I've had multiple infections. Now dealing with clots in my left leg. I feel I can't catch a break. All my team has said it's been the EDS working agaisnt Me but can't show me any proof 😢😭😭 at the current time I want to run away! I did have some missing genes and one stated it was VOS or VVS, my genteics team didn't inform me so I'm currently in contact with the company who ran my BRCA testing due to a new report that, that could lead to BRCA 2 positive. I'm unsure on all of that I will repost once I get the correct info from them. Thank you Spoonie for responding. Have you ever been checked for willevons syndrome? It gets often misdiagnosed as early/late Lyme disorder. Best wishes SA

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited August 2018

    i have it. Feel free to PM me. I have fragile skin and difficulty with wound healing

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