After a 40 year battle for answers, Julie was finally diagnosed with a collection of rare conditions.

Put simply, Julie has a rare connective tissue disorder (Ehlers Danlos Syndrome, EDS) which makes her ligaments too weak to hold her skull to the vertebrae in her neck efficiently. This results in her brainstem being stretched and crushed by these unstable, moving bones. This causes devastating and painful symptoms in every body system. The conditions are called Craniocervical Instability (CCI), Atlantoaxial Instability (AAI), and Atlantoaxial Subluxation (AAS).

For those of you wondering, it is very common for Ehlers Danlos Syndrome people to look very healthy despite their unbearable pain. One of the many difficulties in gaining a diagnosis. 

Julie also has a related condition called Occult (hidden) Tethered Cord Syndrome where the spinal cord is attached to the inside of the spinal column and gets stretched causing many further symptoms.

Together, this set of conditions occurs somewhere between 1 in 2,000,000 and 1 in 10,000,000 people. As very few people have this and it is not known by the majority of doctors due to its rarity, the surgeries are performed by very few surgeons. They can be found in Spain and in the USA. The unique problems which EDS presents in surgery means that an expert in this surgery who also is familiar with these additional complications is vitally necessary.

EDS occurs in about 1 in 8,000 births. The instabilities occur in about 2% of those affected by EDS. Of that 2%, approximately 2% have instabilities severe enough to require surgery or more than one surgery to give relief from excruciating pain and many other symptoms and to prevent death due to many possible complications including internal decapitation.

Julie has been consulting with world leading neurosurgeon and expert in the special needs of EDS patients, Dr Vicenç Gilete, at the Centro Médico Teknon Hospital in Barcelona, Spain. Fortunately he is not only the best doctor for Julie's complex conditions, his fees are far cheaper than those in the USA. Having priced just one of the surgeries at a well known clinic in the USA, Julie knew that it was not an option. Just one surgery coming in at US$1 million! That would mean anything up to US$3 million would be required for hospital fees alone.

This surgery is Julie’s last treatment option.

For a complete look at Julie's conditions, symptoms, diagnoses, surgeries, costing, documentaries, and short videos about patients of Dr Gilete, please take a look at her website www.zebraheard.org

Zebra Heard Fundraising campaign for Julie

The zebra has become a symbol for Ehlers Danlos Syndrome. This comes from a saying used when teaching student doctors: "When you hear hoofbeats, think horses." This means that the most common reason for the symptoms is most often true. But, like in EDS, the hoofbeats may just be zebras! So, Julie decided to name her campaign Zebra Heard because it wasn't a horse the doctors heard!

Although the video is poor quality - it seems to have been recorded on a phone from the television, this is the story of Ylena. She has Ehlers Danlos Syndrome. She had two of the three surgeries Julie requires. This Body Bizarre episode follows her through her journey from the UK to Spain for surgery at Centro Médico Teknon Hospital with Dr Gilete. Julie requires one further surgery to fuse more cervical vertebrae than the C0 to C2 fusion which will attach her skull to her spine. This extra surgery will also address spinal stenosis (narrowing inside the spine), osteophytes (sharp, bony growths inside the spinal column), and premature degeneration of disks. After these two cervical spine surgeries Julie will no longer be able to tilt her head up and down or turn her head from side to side. Her third surgery is tethered cord release surgery which Ylena also undergoes in this video.

I hope that you will consider helping Julie to end 40 years of sickness and pain by donating to her fundraising campaign, Zebra Heard.

Zebra Heard Campaign for Julie Peterson