Tarlov Cyst Society

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This is us! When I read this story I felt like my story was being told. It’s the story of too many who live with rare and complex health conditions that aren’t... well known or understood by society. Many of us spend a lifetime trying to find our place in a world that isn’t built with our needs in mind. This story is the same story that could be told of Tarlov Cyst Disease patients. Like MS and many other conditions we do have good days. Many days we look just like everyone else. The biggest difference? We’ll hide for days, weeks, months and years on end when our symptoms come on strong enough to stop us from living. In those days we struggle to make sense of symptoms that don’t fit in any recognizable, known disease. It was difficult to read this article, but it was also inspiring. Finally someone is talking about those of us who haven’t been able to share our stories. Hopefully this conversation will grow! We need so much more than just words. We need action! A place where people like us fit. See more

Tarlov Cyst Disease is more than an incidental finding. It’s a diagnosis that can devastate lives, tear families apart and destroy dreams that once inspired and... excited. Persons diagnosed with Tarlov Cysts are almost always stuck in that crack between good healthcare and no healthcare. It can force us to accept the painful reality of what is as we’re forced to sit idly by, suffering through unimaginable pain as our lives fall apart. Thankfully, this disease is still being researched, but that doesn’t change what is for the patients of today. Even though science has proven these cysts to be a significant finding capable of meaning so much more to anyone diagnosed with Tarlov Cysts, they’re still ignored because no one knows of the new medical understanding that should be changing everything for those living with this disease. In the rare disease world RESEARCH is the goal! It’s the dream, and it’s the main focus for most funding investment and fundraising, but sadly there doesn’t seem to be much room, or opportunity too teach about the NEW what is, especially if the only people who know, or even really care are the people who’re laying in bed suffering from the effects of this disease. During the past ten years, since being diagnosed with Tarlov cysts, I’ve had to accept the loss of so much, and so many. This experience has changed me, as it can and often does change most people forced to walk this path. Because of the changes this experience has caused I’m now travelling this path without the help and support that I might have had if my condition had been something more easy to understand, more typical, or easier to treat and/or manage. Rare has left me chasing some really big, not easily answered questions in almost an obsessive way. I knew in my gut that there was more to this than I’d been told, but just as I started to accept what is, something happened to force me to keep trying. Today, I’ve begun a new part of my journey. It may be taking me down an even scarier road, but this one is a road that’s supported by something tangible. Something proven. It comes from a biopsy result that probably should have been done a long, long time ago. This new part comes with more testing and possibly even a lot more biopsy’s, but it also comes with possible treatments and even some hope that could, if I’m lucky, send me into remission. A fluke biopsy of a rash I’d had since I was very young held the secret that just might explain why, what and how this all got to happen. It could explain ALL of my symptoms and not just a couple, or a few, or half of them; it could explain all of them like no other diagnoses ever did or could! Thanks to that annoying rash I was diagnosed with Vasculitis. That rash, the one that came and went as it wanted without ever being questioned, came, stayed and kept growing until it gained enough attention to force a biopsy. That biopsy may be the first of several as we search to see how much of my body has been impacted by this autoimmune disease. During my rare journey, that began with a finding of multiple Tarlov cysts, I’ve been diagnosed, and misdiagnosed with an arms length of rare diseases just to end up back where the first signs started which was on my skin. Today, the referral has goes into a vasculitis specialist in Vancouver who -from what I’m told so far- will check to see if my vasculitis is, and always was my problem. If that is my problem then there is some hope of putting my body back into remission. Right now there are a lot of ifs but they’re the kind of if’s that’s I can live with. This is the ONLY diagnosis I’ve ever been given that has ever been able to explain and connect every unique and unexplainable finding, every pain and every problem I’ve had for as long as I can remember. Being rare, and trying to make sense of which RARE you are is like looking for a needle in a haystack and most times that search is only winnable when the patient who lives with rare is involved in every step. Thankfully I’ve got a good care provider who treats me like a part of my care team and not just a patient.

Symptomatic Tarlov cysts are often overlooked: ten reasons whya narrative review Published online: 11 May 2019 Springer-Verlag GmbH Germany, part of Springer Nature 2019 https://documentcloud.adobe.com/link/review

Thank you for sharing your story, which in many ways tells the story of our shared experiences. Your story tells the story of too many people who’re left to fight for answers, while also sick, scared, and suffering. Thankfully we have each other. Everyone within the Tarlov Cyst Society is very grateful to have Donna Corley as one of our national leaders! Thank you for the love Donna.

Thank you for sharing your journey Donna Corley. I know it’s never easy to share the intimate details of our lives, but every member within the Tarlov Cyst groups are grateful. Too many of us suffer in silence. Thank you for empowering us all!

Tarlov Cyst Society of America group leader Donna Corley shared her personal journey of living with Tarlov Cyst Disease and Arachnoiditis - Page 13 Tarlov Cyst Disease comes with no known cure and minimal treatment options. Please read and share the Rare Revolution Magazine, and help spread awareness of the realities faced by those living with Rare Diseases around the globe. Join the movement - Please be Rare Aware!... https://edition.pagesuite-professional.co.uk//default.aspx