Zebras have become a symbol for rare, unknown, and difficult to diagnose diseases. Why zebras, you may ask? That is a good question! I first heard this line many years ago on an episode of House, M.D.:
When you hear hoofbeats, think of horses not zebras.
The idea being that generally, in medicine, if you go to the doctor with a list of symptoms, the doctor should consider the most common reasons for the symptoms first, before moving on to more obscure options. Wikipedia explains the origins of the saying here.
February 28th is Rare Diseases Day. The National Organization for Rare Diseases (NORD) wants to raise awareness of the reality that 1 in 10 people suffer from a rare disease. There are currently over 7,000 known rare diseases, and many that have yet to be named/discovered.
If you aren't familiar with my journey, I suggest starting here. This was our first trip to Mayo, and when we finally got a definitive diagnosis.
I have CIDP (Chronic Inflammatory Demyelinating Polyradiculopathy). There are estimated to be about 5-7 cases of CIDP diagnosed per 100,000 patients. It has been a long, difficult, and painful journey. It is important to raise awareness, because rare diseases don't get the funding for studies or drug trials like well known illnesses do, which means there is less chance for a cure.
On March 13th, I will be loading up the car and heading back to Mayo Clinic.
I started doing weekly IVIg infusions on October 26th, 2018, and have 2 more infusions before I return to Mayo for repeat testing. Please pray for clear results. So far, I have not really noticed any difference, although I have had a lot of headaches, high blood pressure, and flu like symptoms from side effects. I don't want to continue the treatment if the testing can't conclusively verify it is working.
I will keep everyone posted of my travels and my results. In the meantime, I will be wearing my zebras stripes today to #showyourrare
Until Next Time~
Shari
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