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Rare Disorders, IBC and Zebras
Don Lowe

When you hear hoof-beats don't assume it's a horse – it might be a zebra. This venerable medical school adage is a fundamental credo for the non-profit organization, National Organization for Rare Disorders (NORD), where I function as a writer/researcher of investigative therapies for more than 1,200 rare diseases. Yet, it took the unfolding events of my mother's diagnosis of Inflammatory Breast Cancer (IBC) to make the zebra line hit home.

Mom's story is a familiar one to IBC patients and their loved ones: the doctor tells the patient that she (and sometimes he – men get this) has mastitis or some type of breast infection. The doctor pacifies the patient's cancer fears by assuring her that breast cancer doesn't present itself this way. An antibiotic is prescribed. It usually works. But this one has no effect on a breast that continues to be warm to the touch, is swollen, discolored, and is often painful. The doctor instructs the patient not to worry, switches antibiotics, and sends her home. Nothing changes, and after a third round of antibiotics with no positive results, the patient seeks the opinion of a second doctor. This doctor hears a different set of hoof-beats and orders an biopsy. It's cancer. A rare, aggressive cancer called Inflammatory Breast Cancer. IBC accounts for approximately one to three percent of all breast cancer cases. A cursory Internet search on the disease is a sobering experience.

My mother is one of the lucky IBC patients. In many cases it has taken patients months and even years to get a correct diagnosis, dimming their survival chances as each day passes. Her diagnosis took about 6 weeks. Still too long! However, a P.E.T. scan revealed to my mother's doctors that the cancer had not entered her organs or bones, passing only as far as her axiliary lymph nodes. She was deemed to be in the best possible stage for IBC. It's called Stage III.

Upon diagnosis, IBC is almost always found in the armpit lymph nodes. It bears repeating that a very aggressive cancer cell characterizes IBC and once a reasonably certain diagnosis is made, treatment must begin immediately. That generally entails chemotherapy with the goal of reducing the tumor, surgery (usually a radical mastectomy), and then radiation.

Although I began with a familiar story for those touched by IBC, it's not a familiar story to the world at large. Nor is it familiar to a large number of medical professionals. When I recently informed a doctor friend that my mother has IBC, he gave me a look that I have grown accustomed to lately. The look says, "What's that?"

On a daily basis we at NORD hear from patients from all over the world who have been diagnosed with a "What's that?" We give them everything we can: disease reports, recent medical journal articles, and advice on where to get treatment or further information. We provide assistance programs to help patients afford their treatments, treatments that are often expensive because the user pool is so small. Rare diseases like Fabry's or Gaucher's cost upwards of several hundreds of thousands of dollars annually to treat. The atypical occurrence of such serious conditions may seem like a good thing -- and it is -- until you're the CEO of a pharmaceutical company developing a treatment and you have a profit bottom-line to fret over. Some of that fret was relieved in 1983, however, by the passing of the Orphan Drug Act, which enabled drug companies to research and develop treatments for rare disorders with subsidization from the Federal government. NORD founder and President, Abbey Meyers, was essential in helping make that law. Ms. Meyers continues to be this country's leading lobbyist for those afflicted with conditions that are out-of-bounds of the usual diagnoses. And lest we make pharmaceutical companies the bad guys, be informed that they have taken part in major efforts to provide treatments to patients for rare disorders at a reduced cost. The advent of NORD in 1983 extended the first significant ray of hope to an entire patient sub-group that had been, for the most part, ignored. NORD‘s logo, Out of the Darkness, into the Light, appropriately reflects this.

My 77-year-old mother's good health and sunny outlook on life, along with a remarkably talented team of medical professionals at the Roger Maris Cancer Center in Fargo, North Dakota, provide our family with vast hope in the fight against this insidious disease. Her spirit is simply amazing. She is a strong, resilient and inspiring person. Her battle motivated NORD to add IBC into its database of rare disease reports. Another ray of hope, another assault on What's that? And remember to keep an ear out for Zebras.

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