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Our Life with Ehlers-Danlos Syndrome

Hear of one mother’s journey to help her teenage child, and their experience with The Driscoll Theory. Incredible, heart-warming and honest.

In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, POTS

Tickle Me Tubies

Handmade feeding tube pads and other tubie products

In:

The Driscoll Theory® Newly Revised is now Available for Purchase

After much delay The Driscoll Theory® Newly Revised is now Available for Purchase as a downloadable PDF. We decided a PDF was the quickest way to get this information to you. The PDF is not printable; however if there is enough demand we’ll see about producing The Driscoll Theory® as a book.  Click on the icon or link or icon to buy it now. Buy Now

In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Orthopedic Issues, Pain Control, POTS, Vascular abnormalities

EDS Today

A strong advocacy group bringing awareness, education and hope to the entire EDS community!

In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Orthopedic Issues, Pain Control, POTS, Vascular abnormalities

EDSRegistry.org Take a look!

Angel Lucas (fellow EDSer and Spoonie) and her husband are creating this awesome map of EDSers and where they live! They have much more in store for this site, and your registration can be as confidential as you would like. Please take a look and consider registering! It looks amazing so far!

In:

Potsie Mama

Great blog about POTS, EDS and family…making it all work!

In: Coping, Ehlers-Danlos, Fibromyalgia, Pain Control, POTS

Illness Sucks but I find the Funny!

Dealing with a chronic (especially invisible) illness can be more than trying! Need a chuckle? I love this site to share some of our outrageous and silly moments. Enjoy!

In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Multiple Sclerosis, Pain Control, POTS

TheEyeDocBlog.com

Dr. Diana’s hubby’s blog. Dr. Rich Driscoll has numerous entries about Ehlers-Danlos syndrome, and the ocular effects of connective tissue disorders. Just click on areas of interest in his word cloud to the right.

In: Ehlers-Danlos, Hydrocephalus, POTS, Vascular abnormalities

ChronicRants.com/

Rants and raves by, for, and about those with chronic illness(es). Funny and informative!

In: Coping

LifewithPOTS.com

Carleigh, a delightful 19 year old dealing with the daily struggles of POTS, has created this website to raise awareness of this debilitating condition. She shares how she copes with it on a daily basis. Inspirational!

In: POTS

EhlersDanlosNetwork.org

EDS Network Cares is a non-profit organization established and driven by EDS patients and family members who share a belief in, and a passion for research and education. This all-volunteer network is led by devoted volunteers whose primary goal is to make a difference in the lives of people who are suffering each and every day from Ehlers-Danlos Syndrome.

In: Ehlers-Danlos

PotsPlace.com

Mission: To raise awareness of autonomic nervous system dysfunction and to promote dysautonomia education, support and networking.
The Dysautonomia Information Network (DINET) is a volunteer run 501(c)(3) nonprofit organization.

In: POTS

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