The 80 Percent

The 80 Percent

Read on to learn about the three distinct classifications around #angioedema and why we do what we do to bring right attention to #the80percent!

DID YOU KNOW…

Angioedema is an orphan’s disease with three distinct classifications?

– Idiopathic Angioedema, comprises nearly 80% of all cases yet is less known than similarly, “new on deck,” conditions such as ‪#‎Fibromyalgia‬ and ‪#‎Lupus‬, is finally gaining interest in the medical and pharmaceutical communities and now is the time to get that major financial backing for research, education, and outreach going in the right direction for cause and cure!!!

We have discussed this with professionals involved in this process and they have agreed with me, it is a numbers’ game. Higher numbers of our population equates to what’s in it for them which is why your likes and participation in our this funding campaign, our online discussions, films and events really all it takes to grow this effort at the pace we need–in place of time being lives we feel it’s important to give people with angioedema a chance to focus on time for living and we know you agree!

– Hereditary Angioedema, comprises just under 20% of all forms of the condition, has a great organization with great philanthropy, and although still an orphan’s disease, has established itself, at the very least, as being a condition of note meaning, unlike #The80Percent, it is officially on the map!

– Bradykinin Mediated Angioedema (Say what, now?! wink emoticon ), comprises about 2% of all cases, worldwide! Oh, and I know those two people. wink emoticon Not much is known about this most rarest form and, although sufferers mainly respond to medications as given to HAE patients, they do not receive nearly the same level of interest in research dollars and getting meds tailored specifically to the uniqueness of their disease. Again, the numbers.
Note: There are subclasses within each classification.

Please join us in getting some right attention around idiopathic and all forms of angioedema as well as the related conditions of #mastcellactivationdisorders, #anaphylaxis, #urticaria, and #Crohns.

We appreciate you beyond measure and, knowing that each and everyone one of you are golden links to the chain of our past, current and future good and successes, we ask that you continue to spread the word about the amazing work we are doing here at Life Without A Fork!!! Wishes to all for the healthiest in mind, body, spirit, life, prosperity and love!”

#TheLifeWithoutAForkIdiopathicAngioedemaAdvocacyGroup | #MayYourSwellsForeverBeMinimalatMost | #VanessaWilliams | #KatyaWilliams | #ChillWill | #KellyHilaire

 

Source: The 80 Percent

Published by lifewithoutafork

In 2006, I was diagnosed with the rare and potentially fatal condition known as Idiopathic Angioedema, a histamine mediated condition that causes swelling and similar symptoms that can be brought on by little to no reason. Angioedema’s Idiopathic form is different from other forms of Angioedema in that it is not known to be of a hereditary accumulated and any specific genetic tie-ins and causes are generally unknown. A few years following my initial diagnoses I began to put intentional efforts towards advocating for cause and cure for both myself and all others that have been diagnosed with this detrimental condition. For the last eight years I have personally and with very little help, funded our advocacy efforts–in every spectrum, grown and withheld an international community base, spoken at health expos, in local schools and more about this condition, as well as written, filmed, edited, and produced a documentary film known as Life Without A Fork, telling the story of Angioedema. I have even lost my sister and many others from the condition and very recently discovered that, in addition to my nephew who was diagnosed before me, I have a brother, two sisters and an aunt who have all experienced both acute and chronic cases of idiopathic angioedema. In 2014 I coined the phrase, #The80Percent as a means of distinguishing our number and the need for right attention for the largest group of people living with this rare condition, the idiopathics! Our efforts to raise awareness round Idiopathic Angioedema and save lives, are in need of assistance! Supporting this entire advocacy all on my own is no longer an option as I am now disabled. With our 501(c)(3) non- profit organization being newly established, I appreciate any relating assistance that you may be able to provide, even sharing our efforts with your friends and family. Having started in 2009, advocating for this cause and producing a feature film has been a journey and then some! I am ill with the condition, #IdiopathicAngioedema, so it remains extremely challenging for me to forge on with taking this project to the finish line. I have been offered help, countless times and sometimes, it really gets me down when the follow-through doesn’t actually come. Oft times, it gets me to the point that I just want to say, with all the pleasantries I can muster, “no, thank you.” Doors opening and closing as quickly as the turn-style types to be found in mid-town Manhattan’s office buildings, I continue to persevere as I have finally completed, Life Without A Fork, documentary film! This project, while certain to impact audiences around the globe with its rich, vivid, and most certainly, shocking images, along with its bigger than life storylines, will also serve as advocacy to help save lives, yes, mine included, thank you very much! :), by getting some, ‘right attention,’ around #ChronicAngioedema. Absolutely a project that is near and dear to my heart, I work hard to find cause and cure for this potentially life-threatening disease. For my reward, God has not only been steadfast in his willingness to help me make this happen, he continues to remind me that, as per the great words shared by my mom, the late, Katie Tucker, “Every man is a golden link in the chain of my good.” And, although I may be flying without a net, it is through the endless source of support I receive from others, like you who are His angels and are amongst my family, friends, fellow-sufferers, fans, celebrity associates, and overall well-wishers, I fly forever on God’s wings.

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