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March 2009

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“I’m tired of hearing about Breast Cancer all the time,” said my mother over dinner this past reading days’ weekend.

Growling, I narrowed my eyes and looked up at her over a mighty piece of homemade meatloaf, “It’s Breast Cancer Awareness Month, Mom,” I replied.

She shook her head, “Still. Do you have any idea how much money those groups receive? If people just spent half of that money on all the Zebra diseases and syndromes, it would help so many people.”

Do you know what a Zebra disease is?

According to MedicineNet.com:

“The term ‘zebra’ in medicine does not refer to the striped African animal, but to an unlikely diagnostic possibility. It comes from an old saying in teaching medical students about how to think logically in regard to the differential diagnosis: ‘When you hear hoof beats, think of horses, not zebras.’”

A Zebra disease or disorder is one that is difficult to diagnose, not very well-known and sometimes affects less people than other diseases. However, when added together, those affected by various Zebra illnesses far outnumber those affected by any single well-known sickness.

Zebra illnesses are also called Fascinomas.

One particular Zebra is Ehlers-Danlos Syndrome (EDS), a rather common uncommon disorder and the specific disease to which my mother was referring.

EDS is a chronic illness caused by a genetic defect in collagen synthesis. It carries a wide range of symptoms, many of which are highly painful and some of which can prove fatal.

There is no cure.

Common symptoms include flexible joints that easily dislocate and degrade, stretchable skin that easily scars, curvature of the spine (scoliosis), consistent pain, jaw problems, early-onset arthritis, unprompted tooth decay, fragile blood vessels and heart problems, muscular deficiencies (both on a whole and especially of the eyes), lung collapse, sudden onset (and loss of) allergies (such as to lactose, dissolvable stitches or soap), sudden onset (and loss of) mood disorders such as OCD, and a tolerance to certain medications, especially mood stabilizers, anesthesia, and pain-killing narcotics, among other, less-common symptoms.

Various sources confirm and deny some of these symptoms, while others are more widely accepted. Many of those listed here I have witnessed personally.

In my house, EDS is brought up a lot. My sister has the disorder and carries over a dozen of the symptoms. Many of my family members, on both my mother’s and my father’s sides, including myself, have some of the symptoms, but don’t quite fit the definition of having the disease.

According to various information websites, it is estimated that close to 1 in 5,000 people worldwide have this genetic disorder in some form, and 1 in 10,000 have the most common form, called Hypermobility.

Despite these numbers, it took over half a decade to get a diagnosis for my sister, and finding doctors who even know about EDS is still a challenge to this day.

And, to top it all off, there is no cure, nor anything that can slow the onset of future symptoms—only a few medicines and treatments that do nothing about the cause.

A search of the World Wide Web brings a few support groups and two or three major, poorly funded organizations. No big contributors send money their way, and publicity, despite their incredible efforts in the contrary, is practically non-existent.

More research needs to be done in order for people with disorders such as EDS to be helped. More money needs to go to these groups in order for more research to be accomplished.

I don’t, however, think people should stop caring about the well known illnesses like Breast Cancer, MS, Cystic Fibrosis, etc. These are diseases that affect millions of people.

I do, nevertheless, think that people can and should care about the other diseases and disorders, as well. There’s no reason why the public cannot care about both at the same time.

Just as I can simultaneously care about the genocides in Darfur and homelessness in this country, you, too, can care about and give to both kinds of charities.

The Zebras are depending on it.