- Worth The Fight (WTF!) Online Community
- Chiari Action Network (C.A.N.)
- Advocacy Discussions
- Health & Fitness Discussions
- Online Peer Support
Our Worth The Fight Group is on Facebook, with nearly 10k members (patients and their families), struggling with the following:
- Ehlers-Danlos Syndrome (EDS)
- Intracranial HYPERtension (IH/IIH - high ICP)
- CSF Leaks/Intracranial HYPOtension (SIH - low ICP)
- Tethered Cord Syndrome (TCS/OTC)
- Craniocervical Instability (CCI)
- Atlantoaxial Instability (AAI)
- Basilar Invagination (BI)
- Chiari Malformation (congenital and acquired)
- Syringomyelia/Syringobulbia
- Dysautonomia
- Mast Cell Activation Syndrome (MCAS)
- Neurological Gastrointestinal Motility & Absorption Disorders
- Neuralgia/Nephropathy
- Sleep Related Issues
- Chronic Inflammation
- Cognitive Struggles
WTF! stands for Worth The Fight! Some names have no meaning, and some names mean absolutely everything to and about the bearer of the name. Our name falls into the latter category.
Worth The Fight (WTF!) has been on social media for many years now. With more than 9k members, we have found that it takes a determined community to bring about the changes that we need, and that REQUIRES our ability to openly discuss information pertinent to our condition(s).
We as Chiarians have learned the necessity of educating ourselves and helping one another. Our ability to do so has already revolutionized our fight at an individual level, but we need to be proactive in order to accomplish real change on a larger scale. From our right to competent medical care to our rights to proper pain management options, we cannot expect people to fight for our rights unless we are first willing to fight ourselves. Please stay tuned to this area with calls to action and updates. All of us need to come together so we CAN make a real difference! Individually we have small voices that are easy to dismiss, but together we are strong, loud, and fierce!
We have a right to proper help with our pain! Some of us have lost rights in certain states and others are being threatened for the future loss of pain control options. Our rights as Chronic Pain Patients need to be a focus for all of us. Let’s help our legislators understand what we face and make our voices heard!
COMING SOON! Recent studies have indicated the intricate role between neuropathic pain and the endocannabinoid system. With our doctors' hands being tied in helping us with pain control, some EDS/Chiari/Comorbid patients are finding relief with medical cannabis (CBD/THC). Let's work together to help every patient have as many options as possible, because our legislators don't understand our pain, we need to help them understand.
COMING SOON! Our ability to freely share and discuss medical findings is at risk, and that can be so detrimental to patients with complex diagnoses like ours. Let’s work together to stop the censorship by “independent fact-checkers” that KNOW NOTHING about Connective Tissue Disorders.
COMING SOON! Many don't know this, but nearly every study that Chiari Bridges uses in researching topics that can help us as patients now come with a price tag. When the research behind the study is privately funded, that's understandable, but when it's being paid for with tax dollars, we shouldn't have to pay to see what our dollars paid to find out! Let's work together to try and change this!
Help pull together resources to help us learn to advocate for ourselves better. Because advocacy is necessary to redefine our fight!
As EDS/Chiari/Comorbid patients, we are all too familiar with the obstacles and difficulties we face in finding the answers, help, and care we need. Let's pull together our resources, what has worked and what hasn't worked for us, and use it as a stepping stone to help others learn to advocate for themselves and redefine our fight!
Nobody knows the needs of an EDS/Chiari/Comorbid child, like that of a parent who has already had to fight the doctors and school system to get their child the care and accommodations that they need. Let's pull together our resources and help other parents learn to advocate for their child's needs.
The odds are heavily stacked against us, but we can defy some of those odds! While we can't control everything going on with our bodies, we can learn to control that which is still within our control in order to change where we're at! We cannot leave it all to our doctors, far too many of them don’t understand what we’re facing anyway (they think it’s all psychosomatic).
Most of us have spent years (or decades) complaining about symptoms only to have it fall on deaf ears by those we love and trust. Overtime, that can wear out even the strongest and most confident amongst us. We tend to stop believing what we feel to be real, and it ultimately changes the way we see ourselves and our attitude towards everything pertaining to us. We need to turn our perspectives, so that we see ourselves as worthy and capable of more.
We don’t have to ignore our reality or turn a blind eye to the negative aspects of our conditions to have a positive and healthy perspective. We can choose to frame things in a positive light. For example, if I am no longer able to walk as far as I could this time last year, I can look upon that situation with an air of defeat… or I can remind myself that I was also unable to walk that far three years ago, but with determination, with time I made progress! It may be unfair that I must start over again, but I am worth every ounce of effort that it takes to do so. I can acknowledge the unfairness, and then choose to focus on making progress towards my goal. A positive attitude is not going to will Chiari or EDS away, but it can improve our experience of living with these conditions.
Learn what other patients have found to reduce pain and improve their quality of life through diet, exercise, and stress control.
Most of us have spent years (or decades) complaining about symptoms only to have it fall on deaf ears by those we love and trust. Overtime, that can wear out even the strongest and most confident amongst us. We tend to stop believing what we feel to be real, and it ultimately changes the way we see ourselves and our attitude towards everything pertaining to us. We need to turn our perspectives, so that we see ourselves as worthy and capable of more.
We don’t have to ignore our reality or turn a blind eye to the negative aspects of our conditions to have a positive and healthy perspective. We can choose to frame things in a positive light. For example, if I am no longer able to walk as far as I could this time last year, I can look upon that situation with an air of defeat… or I can remind myself that I was also unable to walk that far three years ago, but with determination, with time I made progress! It may be unfair that I must start over again, but I am worth every ounce of effort that it takes to do so. I can acknowledge the unfairness, and then choose to focus on making progress towards my goal. A positive attitude is not going to will Chiari or EDS away, but it can improve our experience of living with these conditions.
Learn what other patients have found to reduce pain and improve their quality of life through diet, exercise, and stress control.
A HEALTHY DIET IS NECESSARY FOR CHANGE… When you’re not feeling good the last thing we usually want to do is spend time cooking, but what we eat can increase inflammation and inflammation increases pain and much more. Share tips and recipes with other members, that aim to help control pain and improve overall health!
MOVEMENT IS NECESSARY FOR CHANGE... When you struggle to hold up your head and every joint in your body hurts, exercise is the last thing you want to think about doing. We’ve all made commitments to exercise more and failed to live up to our own expectations. We get it! Let's talk about it, strengthen our resolves, and figure out what works, together!
STRESS REDUCTION IS NECESSARY FOR CHANGE…
It’s easy to be stressed when you’re dealing with pain, but stress is terrible for our central nervous systems and can cause an increase in neurological pain/symptoms. Your brain, spine, and nerves hate stress. Its effects can reach nearly every system in your body. Find/share relaxation tips to reduce stress, improve your central nervous system and help control pain.
While separated by land and oceans, we are not alone! There aren't a lot of people who understand all that we go through. Our doctors don't understand and even the best of family members don't fully understand no matter how hard they try. Talking to people that share your struggles can be empowering as we learn to draw on one another's experience (good or bad).
We hold online support meetings on the 2nd and 4th Tuesdays of each month. Our meetings are exclusive to members of Worth The Fight (WTF!) group members, and the friends & family members that they invite!
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Knowledge is power and as patients we’ve learned that our lives and livelihood often depend on it! We spend far too long being told nothing is wrong when we're struggling to even hold up our heads. Our pain is dismissed as being an “incidental finding,” or worse yet, when they deem it a “conversion disorder” and something better fixed by a therapist. We invite members to lean on the knowledge of other members who have already fought the battles you’re fighting in our Members’ Think Tank.
