Welcome to Wetzel's EDS Life!
We are all told "Live Life To The Fullest". And we aim to help you do just that. Ehlers Danlos Syndrome is a complex and difficult condition to live with and manage. And we are big believers in having the latest and comprehensive information available for those who have it and their families.
We have big plans coming up this year. Plans are in the works to start having regular video talk sessions between Zebras to discuss different topics like pain management, cost of medical care, how we are treated in the hospital, treatments, medications, the struggles we face within society and so on. But we need your help. We want to know what topics you would like to hear about. The plan is to live stream and record at the same time using social media. The recordings will be uploaded to the website so that if you missed an episode, you will be able to watch it when you have time.
If you have any ideas, suggestions, live in the south central area of Pennsylvania and would like to be involved in the Talk Sessions, don't hesitate to message us. The best way to reach us is through the social media on Facebook and Twitter. The links to those pages are at the top of every page of the website, Don't forget to sign up so you can get notifications when there is new content.
It is free and we do not distribute private information to any third parties. If you would like to contribute in any way, whether it be in writing articles, giving photos to post, posting on the main page or coming up with new ideas on how we can improve the site to better serve the Zebra community. We are a completely non-profit. organization. No money ever exchanges hands and we do not plan to change that in the foreseeable future.
We believe that everyone should have access to information that they need, desire or are curious about, without having to jump through so many hoops and obstacles to do so. And then trying to figure out if the information is truly legitimate or false. My team and I do this work for you so you have access to accurate information and don't have to worry about second guessing it.
If we do accidentally let something false slip by, please let us know so that we can fix the error. And finally, please like and share our page and articles on social media and share them. The more people who read these articles and really start to understand the complexity of this disease, the more research may be done and someday we may have a concrete treatment option.
Mandy Harvey is a very unique woman. You may recognize her from America's Got Talent! Season 12. She is a Zebra, but her stripes are not all that they appear. Mandy lost her hearing at the age of 18 due to the type III EDS she has. However, she did not let this deter her from pursuing her dreams of being a musician. Using tactile feeling through her feet, muscle memory, and trusting her pitch, she is able to play the ukulele and sing, producing some of the most unique and beautiful music ever heard. Instead of letting EDS be her disability, she let it become what gave her the ability to be such a fantastic musician and performer. This shows inspiration can come from the most unlikely of places in the most unlikely ways. And we wish her the very best in her music career.
Join our EDS Data Base!
Thanks for your patronage. We are trying to create a database of sorts to link more Zebras together so that we can support and share info with each other. Please only insert your information if you or a loved one who has EDS wants to be added to this database. Patrons will have access to this information so they can find Zebras in their area once I have compiled enough names, I'm shooting for 20.
If you would like to, please send me a message by clicking on the bar to the right It may take me a little while to compile a database, It depends on your responses. I look forward to talking to all you fellow Zebras.
Succes Through Adveristy!
When you suffer from an underdiagnosed or rare condition, you can feel powerless, and isolated. It is not uncommon for medical professionals to not be informed about complex diseases and conditions in other fields of medicine than their own.
To give back that power to people with these conditions is our goal. I tell people all the time, "The best way for your doctor to help you, is for you to help your doctor help you". Having access to accurate, credible information can do just that. Doctors spend years in school and residency. And the human body is a very complex machine. By making information about EDS and it's related conditions easy to access in one central source, it is our hope that patients can take back their lives and live them to the fullest. No one should have to suffer because of ignorance.
We work very hard and tirelessly to find the latest information and breakthroughs so you don't have to spend hours in a search engine. By spreading awareness, we can help to relieve the suffering for all. Knowledge is power and when it's used properly, it makes all the difference in the world.