My Story

What we thought were simply childhood dislocations, growth spurts, and hormonal migraines turned out to be so much more.

Disability, inability to drive, unable to stay home alone for any length of time, use of a wheelchair at times, the need for a service dog, and now the possibility of a brain surgery or 2.

A little less than 3 years ago, our world began to take a roller coaster ride, with Shea in the front seat. Little did we know that what we thought were occassional dislocations years ago would turn out to be a rare connective tissue disorder that affects 1 in 5,000 people. It's called Ehlers Danlos Syndrome. (EDS)

After a constant decline in Shea's health as well as the lack of local physician's knowledge of EDS we called Dr. Clare Francomano in Baltimore, Maryland. She is a geneticist and an expert in EDS. She has done years of research on EDS.

This 3 hour appointment was very informative and educational for both Shea and I. First of all she said that Shea had Classical EDS not just hypermobile as we had first been told.

Then she went on to explain that she believes ALL Shea's health issues;(seizures, blurry vision, numbness and wealness in hands, legs and feet, severe back of the head pain, neck and back pan, gagging reflex. her body's inability to control it's temperature, lack of grip strength in her hands, migraines, loss of memory, inability to think clearly plus all her stomach issues) can be contributed to the fact that she has Cranial Cervical Instability (CCI), along with the possibility of her having something called Chiari.

The CCI was verified as she gets some mild relief once her head is lifted up off her spine. It is made worse by pushing down on top of her head.

The doctor's plan: for us to get Shea to The Chiari Institute(TCI) in Great Neck, NY for further eval. To get an Aspen collar for her to wear as well as a Pronex traction unit for her to use. The traction and Aspen collar do help with her back and neck pain and gives her some relief from the pain in the back of her head. These are other 'sure' signs of CCI.

I have CCI, EDS, Chiari, None-Epileptic Sezures, Arthritis, POTS, Congenital spinal Fusion, Degenerative disks, Osteoporosis, IBS, Asthma, TMD, and Gastroparsis.

I have had 21 surgerys in all (1989-2008)

You may 'wish' there was something you can do. There is, you can pray for Shea and our family as well as the doctors that will be seeing her and working with her.

We covet your prayers, Thank you, Shea

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Shea Bristow posted a new journal entry, "Busy week ahead".

Good Evening prayer warriors.First of all, we want to THANK YOU for all those that contributedto Shea’s Chiari Walk fund raiser.  Youblessed her immensely and your ... Read more

Shea Bristow posted a new journal entry, "Thank you".

Chiari walk is Saterday. My goal was to raise $50. We raised $320!!!! Yay thank you everyone. You can still donate online. I am blessed to have people who care and are ... Read more

Shea Bristow posted a new journal entry.

Hey everyone,3 Life updates: 1) Neck 2) Knee 3) Chiari walk1) I’ve been having neck and shoulder pain for a fewmonths now and I’ve had a special neck flexion CT scan, ... Read more

Maureen Didion signed Shea's Guestbook.

Shea,So glad you had a wonderful birthday love, hugs, daily prayersMaureen Didion "mo"& all your friends a the We Care Foundation Read more

Shea Bristow posted a new journal entry.

Thank you everyone for all your birthday wishs. I'm the BIG 25 years YOUNG. Life's been busy this past week and this coming week our church is having VBS and I'm teaching ... Read more

Maureen Didion signed Shea's Guestbook.

What an amazing young lady.  Despite what you have gone through Shea, you keep fighting.  Your mother is amazing too.love, hugs, daily prayers  Maureen Didion "mo" :O) Read more

Shea Bristow posted a new journal entry.

Good Morning Everyone,Well, I went in to update y'all regarding Shea's Oral surgery and there was nothing here to update!   So somewhere out in cyberspace is a long ... Read more

Lisa Denton signed Shea's Guestbook.

Yeah for a simple surgery!  I pray that this will help you feel better in so many ways!  Rest well! Read more

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