Here are some of my favorite blogs, advocacy organizations, people who have brought awareness, tools, etc.

Hopefully they will be helpful to you also.

Number 1: The Spoon Theory. Easiest way to explain chronic illness to anyone in your life ever. Thank you Christine.

Here is the link to the Spoon Theory. While you are there you should check out the rest of her awesome website.

Number 2: You should also get yourself a spoon ring while you're at it, so you'll always have yourself an extra spoon on your person. To do that I highly recommend Doctor Gus on Etsy. He makes quality spoon jewlery and I happen to own a spoon ring from him and it's awesome! He has no idea that I'm doing this and probably has no idea I own one of his pieces of craftsmanship. I just think he's awesome. So go buy your extra spoons from him folks! :)

Number 3: Living with Bob

This is the one of the most hilarious blogs that has gotten me through some of the darkest days of my journey with chronic illness. It's about dysautonomia (Bob). But I'm sure if you have any Chronic Illness it will work for you too. It's just really, really funny. So go visit my good friend Bob over here. With a blog that sometimes gets over 15,000 hits on just one post, she is definitely bringing awareness where we need it.

Number 4: Life as a Zebra Foundation

I really like this little foundation. Just a girl with EDS and her sister with some chronic health issues starting their own foundation to raise money for EDS and other chronic illnesses. Plus they sell awesome t-shirts with zebras on them that say "Zebras make hoofbeats too" for only 10 dollars including shipping cost. So go on over to the Life as a Zebra Foundation to order you one. I just got mine and love it.

Number 5: Dysautonomia International

In addition to being an advocacy and research organization. Dysautonomia International also does their fair share for bringing awareness as well. They have multiple stores up and ways to support in ways of buying things. I have a shirt from them personally. They also have something really cool set up where you can go to their website at anytime and click on this link and buy ANYTHING from amazon and Dysautonomia International will get part of the profits for research. Below is the shirt that I have from Dysautonomia International.

**There will be more added at a later date, these are all I could think of off the top of my head, suggestions??**



Dysautonomia International is a fantastic organization that has a mission to bring awareness, advocacy, and advancement to the dysautonomia community. They have all kinds of resources on their website for not only the patient but the caregiver, friend, doctor, teacher, parent, etc on their website. They have a medical advisory board that includes patients and some of the worlds most published doctors that work with dysautonomia daily. They have resources on their website that you will never have to pay for. They also have a conference every year in Washington D.C. with a lobby day where they go to the people in congress and the senate and ask for help with our needs. They are an extremely excellent organization. Follow this link to some of their printed materials and please feel free to peruse some of the rest of their website as well for some other helpful information. is another great website to get information for the newly diagnosed patient. There are forums there for patients to talk to one another, lists of symptoms, lists of doctors, what to avoid, what to do, how POTS works, etc. I really liked when I was first diagnosed.

Ehlers-Danlos Syndrome:
Ehlers-Danlos National Foundation is the most comprehensive and informative one stop information place for people to get accurate information about EDS. There are explanations of the symptoms and of all the different types. There is a listing of the different doctors in different areas. EDNF has the history of why EDS is called EDS. There are a lot of other great resources there too.

Another good resource I found is from the Boston Children's Hospital. This is in kid friendly speak which is good since most people get diagnosed when they are kids (unless you are weird like me). It also has some of the more obscure symptoms listed that not all doctors listen for that could be a good indicator (again all of them I had).

For celiac, I'm always a fan of the Celiac Disease Foundtion. They have information on what celiac is and how to follow the diet and all that important stuff of course that is so imperative to being a good silly-yak chick (or dude). But they also have tons of information on awareness and helping kids to feel good about themselves on their gluten free diet and that makes my heart happy! I hated going gluten free when I was an adult, I couldn't imagine being forced to give up all the yummy snack foods when I was a kid. But yes. I love the Celiac Disease Foundation. :)

For Colitis, my go to resource is always the Chron's and Colitis Foundation of America. They have such good educational material on their website. It tells you exactly what crohn's and colits is and what to do when you were diagnosed. There is a resources section that covers everything from new treatments to recipes for colitis to how to apply for disability with colitis.

One of the best Fibromyalgia resources available on the Internet is the National Fibromyalgia Association. They have a resource section on medications, disability issues, work issues, legal issues, lifestyle issues, pain management, overlapping conditions, and so much more. They also have a glossary of terms and definitions. A section on clinical trials. A doctor directory. And an online magazine.

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