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.
Our website is aimed to help make your life easier in any way that we can. And to spread awareness about Ehlers Danlos Syndrome and conditions that are often related to it. EDS is said to be an umbrella term. There are currently 13 types of EDS. Each type presents with its own set of symptoms and complications. And more often than not, there are other conditions that affect the patient other than the EDS.
We hope that spreading awareness will result in an effective treatment and hopefully a cure someday,
A Message From The Board
All of us here at Wetzel's EDS Life hope that you all had a great holiday season and that it was full of happiness, joy, and didn't take to much of a toll on you. As we all know, it is very easy to overdo it during the holidays because we feel good, or pressured, or a host of many reasons. Recovering from the holidays can be a challenge. Especially since it is winter time and winter makes living with EDS, POTS, and certain related conditions tricky to live with during this time. Although this is true for each season as each season has its own unique obstacles and challenges.
A couple of things to keep in mind and a few words of advice to keep you all safe. These are things that I have learned over the years that have worked well for me. Use them at your own discretion. Having some sort of ice melt on hand is always a good idea, it keeps walkways free of ice, reduces the amount of work you have to put into clearing away snow and ice, and if you are low on spoons, it can be a real lifesaver. Not to mention that it has a big chance of keeping you from injuring yourself needlessly. Another thing I have found to be quite useful, when there is just to much snow and ice and ice melt alone is just not going to cut it, having a set of spikes for your boots and shoes is a good investment.
Shoe and boot spikes can be purchased online and in some retail stores. They are sold according to the size of the footwear they will be put on so it makes it easier to figure out what size you will need. They come with extra spikes to replace any damaged or missing spikes,. I personally have never had to use any of the spares because I have never damaged or lost any. These things are tough. Depending how often you use them, how well you maintain the, you can get several years out of one pair. I have gone through 3 pair in 10 years time, But I use mine often each winter.
I got my wife a set as well but she doesn't have to use hers as often as she is much more steady on her feet. There are a couple of different styles, some with velcro straps, and some that are one piece of rubber with studs that pull over the toe and heal and go the length of the sole of the shoe. The latter is the type I prefer, they are quick to put on and you don't have to mess around with straps. And they come off as easy as they go on. There are also spiked tips for canes and crutches. Most types are retractable so you don't have to spend a lot of time changing tips when you want to go indoors.
I have never used these myself, so I cannot attest to how well they work. I have looked at several different models and they do look well designed, however I think it goes by the adage, you get what you pay for. The last thing I want to hit on is snow clearing and your personal well being. Many feel that getting that walkway and driveway clear of snow and ice as fast as possible is paramount. But this is not the case, what is the case is that your health and well being is what is paramount. Sure you may be able to get that snow cleared, but if you spend the next three to five days stuck in bed or on the couch because you are so sore that you can barely move, was it really worth it?
Take your time. The snow will be cleared when it gets cleared. Hopefully you have a support system and people will help you clear away the snow and ice so you don't put to much strain on your body. Winter is hard on Zebras as you all know. We don't need to break our bodies moving snow just for the sake of moving snow. Slow and steady, take care of yourself first. Stay warm, be safe, and have a pain free winter!
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.