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Hope for Local Woman with Rare Disease

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GRANTS PASS, Ore. — A rare medical condition is entering the national spotlight after it nearly caused an innocent father in Texas to serve a jail sentence for child abuse. Now a local woman is raising awareness about that same condition, and the equally rare surgery that could save her life.

Grants Pass resident Kelly Koep first experienced symptoms of Ehlers-Danlos syndrome, or EDS, at two years old. They’ve gotten worse ever since.

Now at 27, she survives on handfuls of medicine a day, holding her head up with a neck brace.

“The pain is one thing, but not being able to do what you want to do is scary,” said Koep.

About one in 5,000 people are estimated to have some form of EDS. Recently it achieved notoriety because its symptoms — frequently broken bones, bruising, and constant pain — are easily mistaken for abuse.

Koep’s family found that out the hard way when she was child.

“She jumped off her bed and she tumbled, and her elbow got dislocated,” said Koep’s mother Wendy. “They would not let me take her home, and they were going to call child services on me for child abuse.”

It’s a reality Koep and her family will have to deal with for the rest of her life. But while there is no cure, there is hope. A handful of doctors can perform the fragile spinal surgery needed to ease Koep’s symptoms.

Hers is scheduled for Christmas Eve.

“I should be able to walk. I should be able to just do basic activities,” said Kelly.

Koep says she likely will never be able to work or have kids. But for someone whose life has been confined to a chair, basic activities never sounded so sweet.

“I can’t even express how it makes me feel just thinking about it,” said Koep. “Just happy.”

Koep’s surgery will be in Maryland this month. After a long fight she was able to get it covered by insurance.

18 comments

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  1. Les & Mari Wolfe says:

    We support and love you and pray your visit to Maryland has great results
    and grants you a pain free and normal return to your family.

    1. Kelly Koep says:

      Thank you so much. I promise to let you all know how it feels to not be a bobble-head anymore. :-)

  2. Kelly Koep says:

    Justin from KDRV was very professional and so caring and did such great job putting the story together on short notice. I appreciate you guys helping me spread awareness for EDS and mentioning my fundraiser to get me to Maryland for my surgery on Christmas Eve.

    If anyone wishes to help, you can find the link by scrolling to the bottom and clicking “newslinks” and going to “Ehlers-Danlos syndrome, Kelly Koep’s fundraising page” or click here:

    http://youcaring.com/kellykoep (or google YouCaring then search for my name “Kelly Koep”)

    Thank you so much. Happy Holidays everyone.

    1. CannabisTV says:

      Kelly, have you done any research on medical cannabis? If not, I strongly urge you to do some reading. Cannabis (aka marijuana) strains that are low in THC and high in CBD are showing amazing results for many medical patients in pain. The CBD is not phychoactive and doesn’t cause a high, but it can reduce or even eliminate pain from MS, ALS and many other diseases, disorders, illnesses and ailments. Indica strains are more CBD heavy, whereas Sativa strains are lower in CBD and Hybrid strains have various mixes of both THC and CBD, you’ll have to try different strains to find what best works for you.

      You also don’t have to smoke it, you can use a vaporizer, make edibles like cookies or even pasta sauce, you can get liquid glycerin tinctures that drop under your tongue, and they even have skin creams infused with cannabis, along with multiple other options. Contact me at admin@cannabistv.org if you want to talk. Check with Southern Oregon Alternative Medicine or The Hemp and Cannabis Foundation to get registered with the Oregon Medical Marijuana Program. You shouldn’t have to be drugged up and zombied out on a handful of addictive pills every day. I hope this info is helpful to you.

      1. Kelly Koep says:

        Cannabis TV,
        I actually have tried cannabis for pain relief, but it just wasn’t for me. As an EDSer, we act very strangely to different medications. A lot of medications don’t work for us the same as other people. For me, cannabis is one of those thing. I have family members that are on it for medical purposes at it works great for them.

        As for the medication I’m on, most of it is for different symptoms, not just regular pain. My skull is compressing my cranial nerves, spinal cord, and brainstem, causing extreme nerve pain and weakness; so I’m on meds for that. My arteries are being compressed by my instability which causes severe migraines from the narrowed arteries so I’m on medication for that. I pass out easily when standing up due to low blood pressure, so I’m on medication to help with my sodium levels. I get bad heart palpitations so I’m on medication to reduce my heart rate.

        Those are just some of my main issues and medications that can’t be controlled with cannabis. A very high amount of people with EDS also have issues that coincide with it like POTS or something more serious, so you should check with your doctor to see if there are medications you can try to help improve your life. Cannabis can actually cause anxiety in most EDSers I know so they usually don’t react well to it. So in my opinion, if you have EDS, you might want to keep that in mind. I’m sure there are plenty of people with EDS that like cannabis though.

        Thank you for the suggestions and your concern. I greatly appreciate it.

        Kelly Koep

  3. Joanne says:

    Dear Kelly, I am very hopeful just as you are that your surgery will be a success & relieve your constant pain. Don’t worry. Be happy. Trust in God & your surgeon. Luv ya, Joanne

    1. Kelly Koep says:

      Joanne,

      Thank you very much for your best wishes.

      I’m not worried about the surgery. I might be a bit nervous, but more than anything, I’m excited. The thought of being able to go through one day without being under constant supervision because of my choking. The thought of not having to hold my breath before every drink or not being afraid to sleep because I wake up choking on my own saliva. Just those thoughts alone make me happy.

  4. Laura says:

    So pleased to see EDS getting more attention since I suffer from it too, though mine is not as severe as Kelly’s. Best wishes to Kelly and her family; hope all goes well and that you see significant improvement, more mobility, and less pain. EDS, a genetic connective tissue disorder that affects a person’s entire body but can’t be easily noticed by others, is not all that rare… it’s just poorly understood by the medical community and therefore rarely diagnosed, especially in its milder cases. People who suffer from it are constantly told there’s nothing wrong with them, and employers often think employees’ problems from it are nonexistent. To learn more please go to EDNF.org… and please don’t be quick to judge when people look normal but are actually in terrible pain from a hidden disease with no cure.

    1. Kelly Koep says:

      Laura,

      Yes, I am very excited that KDRV took interest in spreading awareness. You are right, EDS is much more common than originally thought. I think it’s strange how MS (Multiple Sclerosis) is known by almost everyone, but nobody has heard of EDS. EDS can actually cause some forms of MS. Also brain disorders like Chiari Malformation. Or you can develop a spinal condition and become a “bobble-head” like me.

      As you mentioned Laura, EDNF.org is a great resource. You can also contact me directly through my web page at https://www.youcaring.com/kellykoep or by email at Kelly.Koep@gmail.com I’d be happy to help get you information on good doctors to see. There also is a list of specialists on EDNF.org

      1. Laura says:

        Thanks Kelly! I’ll definitely email you. It sounds like you have the cranial settling (bobble head!) problem that I fear is beginning to happen to me… yikes. I’m sorry you’ve had such a rough journey through this nasty disorder, and when you’re so young, too. Gentle hugs!

        1. Kelly Koep says:

          Laura,

          Yes, I do have some cranial settling but my biggest problem is the craniocervical instability (CCI). I also have subluxations of the rest of my cervical spine and my lower spine and also signs of tethered cord syndrome. I will need to address those issues later with more surgeries but right now my CCI is the most urgent. If you think you are having spine issues, then I know of some good doctors to see. You want to address spine issues ASAP with proper strengthening exercises to keep your muscles around your spine strong. That way you can prolong the need for surgery. Just send me that email and we can talk more.

          I look forward to hearing from you. Email me at Kelly.Koep@Gmail.com or add me on Facebook just by searching my name.

  5. James Bosch says:

    An effort to help her family handle the non-covered expenses:
    https://www.youcaring.com/Kellykoep

  6. Tyrone says:

    It’s a shame they don’t pay for her expenses to get here. Thanks a lot Obama.

  7. Amy W says:

    I too have EDS, but not the same type as you Kelly. I saw the newscast this morning and as soon as I heard the easy bruising, my ears perked up. I sympathize with you wholeheartedly. I am praying for you and a full recovery after surgery. I am glad EDS is getting more awareness, and that doctors are learning more. Which type of EDS do you have Kelly? I know I have the type that effects my skin, joints, connective tissue and I do scar and bruise easily…forgot which type though. We should start an EDS support group!!! Wonder how many people in the Rogue Valley have it!?! Nice job KDRV for sharing this important story and kudos to Kelly for stepping up to spread the word. Best wishes to you.

    1. Kelly Koep says:

      Amy,

      Thank you so much. I’m not really sure what type you are referring to because all types of EDS effect the connective tissue. In fact, that is what EDS is, a connective tissue disorder. It is a defect in the collagen. Collagen is basically the glue that holds your connective tissue together. It effects things such as ligaments, skin, blood vessels, and even internal organs. So, if your joints are hypermobile, you get a lot of dislocations, your skin is velvety smooth and stretchy, and you bruise easily, then you might have EDS Hypermobility (Formerly Type III). Here is link explaining more about the different types http://www.ednf.org/index.php?option=com_content&task=view&id=1348&Itemid=88888969

      I have a severe case of EDS Hypermobility and it is effecting my spine since the spine is a series of joints and ligaments. Not everyone has it as severely as I do and some have it even more severe. In general, the older we get the worse our condition becomes because it is a degenerative disorder. So take care of your body and keep you muscles strong.

      As for groups, there are actually many groups already and there is an Oregon group that meets annually. I would be happy to start a Southern Oregon/Northern California group though. Anyone that is interested can email me at Kelly.Koep@gmail.com or friend me on FaceBook.

      1. Kelly Koep says:

        Amy and Laura,

        I have already been getting a lot of attention from local EDSers and I would love for you to join an Oregon EDS Support Group at oreds.org also, if you have Facebook, there is a great closed group called Oregon Area Ehlers-Danlos Syndrome. You can also follow this link and request to be added using this KDRV report and my named as a reference https://www.facebook.com/groups/347390731965221/

        There are enough of us in southern OR, and Northern CA too have our own meeting. So let’s come together and educate everyone on EDS. I look forward to hearing from you. :-)

    2. Laura says:

      Hi Amy! You too, huh? Sounds like you have either classical type or hypermobility type (that last is the one I have). I’m in Klamath Co. but regularly in the Rogue Valley and would love to meet up with you and other EDSers. I don’t want to leave my email here, but I’ll be emailing Kelly, so if you do too, then we can get each other’s that way. Good luck to you with your challenges.

      1. Amy W. says:

        Hi…yes, I would love to join the support group. I think I do have the classical type. I have been seeing a neurosurgeon for my C1 and C2…basilarinvagination (sp?). So far, I am okay…but I have arthritis is my elbo, crackles in my neck with neck pain at times. Thanks Kelly for encouraging me to keep up my muscles because I have usually been sure to keep up my health and fitness but being a busy mom (adopted 2 kids, couldn’t risk pregnancy) and being a full time teacher has made it tough. Laura, I’d love to meet up with you too. Are you on facebook? Can you get my email through Kelly? Anyway, look forward to connecting.

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