Rare Disease Awareness Month

May is Rare Disease Awareness Month. At Ology Essentials we care deeply for those who are struggling with misdiagnosis, the long road to diagnosis, and the learning curve of learning to live with a rare disease diagnosis. Among our family we have diagnoses of Ehler’s Danlos Syndrome, Mast Cell Activation Syndrome and a pending diagnosis of Gastroparesis. We believe that knowledge is power and gives us the chance to use natural medicine and traditional medicine the best for our bodies.

What is so important about diagnosis is that it helps put the pieces of the puzzle together for both families and doctors. With some rare diseases, like Ehler’s Danlos Syndrome, it may be a case of it being under diagnosed. I (Kayla) kept telling doctors that the number of trips we were making to the bone and joint clinic seemed extraordinarily. I asked, and asked, and asked for answers until one day we landed in the right doctors office. Don’t give up asking questions.

The zebra is the mascot of rare diseases. According to the Ehler’s Danlos Society, “People with the Ehlers-Danlos syndromes and hypermobile spectrum disorders (HSD) often identify themselves as zebras. Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis. But many of us spend years pursuing a diagnosis for disorders that aren’t well known. Or aren’t expected in someone who looks normal, or is too young to have so many problems, or too old. Or even, what we might have is considered too rare for anybody to be diagnosed with it. So the zebra became our symbol to mean, “Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare.”

Because we know there are countless rare diseases we also love to support others as they work to raise awareness of other rare diseases that impact their lives. For that reason we are happy to support Cate Connery Bury Photography Celebrating Motherhood: Mama & Me Petite Portrait Session charity event happening throughout the month of May and benefiting The CURED Foundation that supports research for a chronic, rare, eosinophilic gastro-intestinal disease (EGID).

Don’t be afraid to be accused of being a hypochondriac or keep symptoms to yourself because you don’t want to sound crazy. Seek diagnosis, seek knowledge, seek the power a diagnosis gives you take control of your own health.

Below you find links to studies on the impact cannabis has on certain rare diseases, as well as a link to a database of all rare diseases.

Use coupon code RARE10 to receive 10% off your next order with us.


https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/

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