Despite the pain we face on a daily basis, that our doctors so often ignore…

Despite the anger that builds towards a medical system that is relatively
clueless about our conditions…

Despite the frustrations we face when those we love fail to understand what we’re going through…

… Despite it all, hope remains!

“They tried to bury us. They didn’t know we were seeds.”

There is little easy about the Chiari fight (and that of its co-morbid conditions), but it is easy to lose hope! The thing about that however, is if you look at the complexities of our bodies and the conditions we face, one thing is for sure, we weren’t created for easy! Coping with conditions like Chiari Malformations, Ehlers-Danlos Syndromes, and their many ugly friends can be a very daunting task that we all have to face. There are many challenges, including chronic pain that can be severe, fatigue that can be debilitating, the fight with doctors for proper diagnosis and treatment, the fight with loved ones to be understood and supported, and the general lack of awareness of these conditions in the public. It is easy to lose sight of the light at the end of the tunnel. But, even with all the hardships we face, there is a lot to still be hopeful about.

Education & Research 
One of the most frustrating aspects of dealing with Chiari and its comorbidities is the lack of education within the medical community. There is little more disconcerting than walking into a doctor’s appointment and being asked to spell your condition, so the doctor can Google it. These appointments often end in tears because the doctor has absolutely no clue about our condition, but this is improving. Just ten years ago, few of the doctors we encountered had heard of Chiari Malformation, we had to explain it to almost every doctor we came across, regardless of their specialty. This is happening far less now. While there are still many misconceptions that medical professionals tend to have about these conditions, many have a general level of familiarity now. That means we are making real progress and the future is looking brighter. In a recent webinar on Chiari, Complex Chiari and Craniocervical Instability, Complex Chiari expert, Dr. Paolo Bolognese shared the following:

In reference to the association between EDS and Complex Chiari, Dr. Bolognese shared that he stumbled upon the association in 2002 during office visits, when he saw a half dozen patients in a 2-week period diagnosed with both. After consulting colleagues and experts in genetics and connective tissue disorders, Dr. Bolognese and his colleague, Dr. Milhorat, conducted a pilot study of the association and published their findings in a major neurosurgical journal in 2006. These findings were met with much skepticism among even the world’s top Chiari experts. In 2017, however, at the XXIX ASAP Conference on CM1, Dr. Bolognese submitted a questionnaire to these top experts. 63 experts from 4 countries responded. 77.5% agreed that there is an association between EDS and CM1. 99.5% agreed about the existence of Complex Chiari. On this fight to get other experts to see the connection, Dr. Bolognese said, “Science does not have a linear behavior. It goes in accelerations, stops, accelerations, stops, some steps backwards, some steps forward. So, it took 12 years to convince most of the leading experts in our field. It will take 12 more years to convince the ‘regular’ neurosurgeons. It will take 12 more years to convince primary care physicians.”

While this delay in translating research and scientific discovery into medical practice is frustrating for us as patients, there are also some great reasons to be hopeful. First, there are doctors who have dedicated their careers to helping us find answers and improving our quality of life in the meantime. These doctors are willing to put their professional reputations on the line and face the critics to make improvements in our treatment outcomes. Second, the experts are being convinced, and as more experts come to believe in what we, the patient community, already know to be true, it is more likely that younger generations of doctors and researchers will want to get involved in these areas of research. While many of us are suffering and fighting for care by physicians who fully understand the complexities of our conditions, progress is being made that will likely revolutionize the future of patient care.

In addition to this little snapshot into the experts’ world, anyone who has spent any time in online support groups over the last decade can tell you that patients are getting diagnosed sooner, tested for comorbid conditions more often, and are having better surgical outcomes because they are better informed and are asking all the right questions of their doctors. This trend is likely to continue as patients now have better access to pertinent research information through a wide variety of educational materials offered online by Chiari and EDS non-profit organizations. It is finally OUR time and each of us can do our part to make the most of it, by educating ourselves and sharing information with others, as well as supporting the organizations that make this information available to us.

Thanks to the worldwide availability of the internet and social media, support is easier to access and is more abundant than ever before. Patients and caregivers alike can now find a wide variety of support groups for these conditions on a variety of social media platforms. Groups range from small and intimate, to large and very active, and there is a fit for practically any personality. There are groups for women only, men only, teens only and parents only. There are groups focused on laughter and those focused on hobbies like gaming or crafting. Some groups focus on support, while others focus on information, and some do an excellent job at both. There are international groups where you can interact with other patients from around the world, and there are local groups where you can potentially meet people in your own town or surrounding area. There are also numerous in person support group meetings where you can meet fellow patients, attend educational lectures, participate in awareness activities, and much more. Interacting with others who are enduring similar struggles is not only an opportunity to feel less alone and more validated, it is also an opportunity to help others and even potentially form lifelong friendships.  

The patient community has made great strides in raising awareness for Chiari and related disorders. Between individuals sharing awareness materials on social media, patients reaching out to local media to share their stories and organizations hosting awareness walks, much needed attention and information is getting out to the public. While we still have a long way to go in making Chiari a household name, we are making progress toward it. You can join in these efforts by getting intentional about awareness! What has helped you, might help others!

Creating Our Own Hope
We have been a neglected community for far too long. We have been ignored, dismissed, and sometimes even abused. We have had doctors laugh in our faces, call us crazy, and even accuse us of making things up. It often leaves us feeling hopeless, like there’s nowhere left to turn, but we are standing up and demanding better care. We are demanding that our healthcare professionals educate themselves and study the most recent research. We are demanding that our voices be heard and that we are taken seriously. Although there has been some progress, our fight is far from over. It is just beginning, and we refuse to sink into the shadows because we are mighty warriors who will fight for what we need! When necessary, we will create our own hope! As the old Mexican proverb goes, “They tried to bury us. They didn’t know we were seeds.” Our community is growing every single day and there is a need now, more than ever, to stand up not only for ourselves, but those among us who are vulnerable and need us to do it for them. Please, whether you are a patient yourself, a caregiver, a spouse, family member or friend to someone who is suffering, find your inner warrior and join us in this fight!

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