Posted on February 23, 2021 by jmarsz
Rarity in our world is often a very good thing. All of the most valuable things in our world are so because they are rare. The less of most any one thing, the more desired it is, and the more value it will have. Seems really simple. Gold is scarce. Platinum is rare. Diamonds are rarer. Manhattan parking spaces can go for nearly 1 million dollars where they are most rare in the most desired places! Rarity, in the material world, is king.
In the medical world, especially in our AHC Community, rarity is a different sort of king. We all know Alternating Hemiplegia of Childhood wreaks havoc on our lives, and the lives of our children. It truly is a cruel disease. In addition to all its cruelty, it is RARE. Rare Disease in the U.S. is classified by 200,000 or less patient per disease. In a country of approximately 330 million, just staying within our one country, that calculation is…. well… pretty rare! The counts on AHC vary slightly, but it is safe to say AHC represents nearly 600 diagnosed people in the U.S. (1,600 worldwide!) Among the rarest of rare! Put it this way: if the zebra has become the symbol for rare disease, then AHC would be represented by a blue and green striped zebra with a purple ivory horn! These small numbers, in individual diseases, have the opposite effect on our kids as they do with materials. Because of our rarity our kids and adults are not economically valuable. This cascades to not being a desirable topic for research and development, and ultimately disease is not addressed. Rarity, in the medical world, is a tyrant.
The AHC community has been blessed to have the interest of a few brilliant medical professionals nearly 25 years ago. Those blessings are compounded every year with new interest, new perspectives, and new research! We continue to invest in genetic breakthroughs that will not only help our 1,600 patients but will catapult research for rare diseases worldwide, of which 72% are genetic. Nearly 10,000 genetic diseases are mono-genetic like AHC. It would be an incredible gift to those diseases garnering ZERO attention, with technology that is adaptable from our condition to theirs. This is a gift on which the AHCF is collaborating right now! By increasing the patient pool outside our own disease, we are making ourselves less rare and more valuable. Commonality, in the rare disease world, can be a revolution.
Over 300 million people worldwide live with a Rare Disease. We come together every February in the rarest of months (every four years on leap day February, the rarest of days) to show that Rare is many. Rare is strong. Rare is Proud. Join us this year to bring awareness to our disease and all Rare Diseases. Share pictures of your fight. Show videos of your strength. Tag your social media with #RareDiseaseDay and show your pride. While rare, we are many. We can spark the revolution with our commonality, and perhaps crown a new king in the medical world.
I am looking forward to seeing you all at the coronation.
#ENDAHC #AHCSTRONG #AHCWARRIORS #RAREDISEASEDAY
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