11 Must-Read Blogs and Websites for Ehlers-Danlos Syndrome Newbies
What now? Those two simple words came to my mind shortly after I was diagnosed with Ehlers-Danlos syndrome (EDS) in 2014. After three hours of extensive examinations, my doctor came to the conclusion that I must have EDS, and to my surprise, I not only ended up with this one diagnosis, but he threw other conditions at me, for instance, mast cell activation syndrome, dysautonomia, and cervical spine instability. I was quite overwhelmed at first and couldn’t understand how I got from one diagnosis to four. I didn’t know what consequences all those conditions had, nor could anyone tell me where I could find specialists that could help me figure out my new chronically ill life from now on.
Like most of us, the shock didn’t last long. I soon felt relieved. Relief that I finally found the cause for all my symptoms. Now, I knew the illnesses accompanying me for the rest of my life. I just need to find a way to live in peace with them. Over the next six months, I directed all my energy towards research, and I was dedicated to finding whatever there was to find concerning my diagnoses.
I would like to share the resources with you that helped me through the first confusion and on which I built a basic foundation of knowledge about Ehlers-Danlos syndrome and its comorbid conditions. I read through a colorful mixture of factual websites and personal blogs by people I now know personally today that made me laugh while still educating me about EDS.
1. Ehlers-Danlos Society
The first resource I found was the presentations by professionals at the Ehlers-Danlos conferences held by the Ehlers-Danlos Society (back then they were called Ehlers-Danlos National Foundation). I was amazed how much information on pretty much any EDS-related topic those presentations could include, and I quickly learned all the names of the major EDS experts not only in the US but worldwide. Additionally, they have webinars on their website, as well as the new diagnostic criteria for EDS that had been developed in 2017.
2. EDS Awareness
Just as helpful I found the many webinars by EDS Awareness. You can browse through more than 50 webinars of all the EDS specialists, and you can learn everything from mast cell activation, to physical therapy, to neurological symptoms of EDS. Additionally, you can take one of their surveys and help other EDSers with your answers, or you can connect with your local support group.
3. Chiari Syringomyelia Foundation
This website is more specific to the possible neurological complications of EDS and offers free video lectures by all the specialists dedicated to treating EDS patients that live with cervical spine instability, tethered cord, and Chiari malformation. Since this is an area especially complicated to find help for, I really appreciated their resources.
4. Ehlers-Danlos Support UK
The EDS UK website has great articles on all comorbid conditions of EDS, and they are written by professionals so they can be handed to our family doctors or other specialists not familiar with EDS.
5. Patient Worthy
Patient Worthy is a site focusing on rare diseases. The information they provide is a combination of factual news about all sorts of rare diseases and patient stories.
6. Rare Daily by Global Genes
I love to read the patient’s stories on Rare Daily, but they also give an overview of current research on rare diseases and news.
I also found the following blogs to be helpful to read:
7. Malleable Mom
I found Ashley’s blog soon after I was diagnosed with EDS. She has an incredible talent for writing, and her blog is an awesome mixture of humor, cursing, and seriousness. I love how honest she is about her family’s life with EDS. You also get a good glimpse of parenting and how to manage a family of spoonies.
8. Invisible Not Broken
Monica’s Invisible Not Broken podcast features all sorts of stories around living with Ehlers-Danlos syndrome, chronic pain, mast cell activation, and more.
Kendra’s blog, called Strength/flexibility/health/EDS, is mostly about how to get your body to its most healthy form despite EDS. It motivates me to keep moving as much as I can — even if it is just five minutes.
10. Oh TWIST
Oh TWIST was suggested to me not long ago, and I just started reading it mainly because I loved the title (Oh Twist means: Oh, That’s Why I’m So Tired!). It’s an educational blog with a focus on EDS, MCAS, and comorbid condition mixed with personal opinion.
11. Uniquely Striped
Uniquely Striped, a blog written by Murray Meetze, was suggested by a Mighty community member Soja M. Murray shares everything from research, to symptoms to her own journey going to doctors and getting treatment.
We all know how hard it is to find a doctor knowledgeable about EDS. This makes it even more important to read as much credible information as possible which we can share with the brave doctors willing to treat us. With the help of those websites, I finally felt in control of my life again and knew that I was not alone.
This list does by no means reflect all available resources that are out there. They are simply the websites that kept me sane during a time where I wasn’t sure whether to fight my illness or to accept it. And I hope some of those can do the same for you. I recognize that no website on this list is outside of the English-speaking world; however, please comment below if you would like me to share German resources with people living in Germany. And if you have suggestions for helpful resources in other languages, or in English, please share those in the comments as well.
Getty image by Mactrunk