Angioedema Global Medical Crisis Board

Keep Up Doctors, We Are Learning!

The internet can be a patient’s worst enemy as we scrounge the web looking for answers to our many symptoms, related fears and confusion. However, if done properly or should, “luck be the lady,” and we happen to stumble across pertinent, perhaps even life-saving content, this frantic searching can lead to a more informed patient. Sadly, and far too often, this is where the knowledgeable and professional may collide!

Patients are visiting into the ED’s and hospitals with more understanding about their bodies and necessary health care and these doctors need to stop getting angry about what we already know and simply catch up! Their egos are costing lives! Who polices our medical systems? Our doctors?

Additionally, when it comes to angioedema, although there is no concrete testing to be done for people living with the non-hereditary forms of the condition and medication recommendations are often based on the trial-and-error approach, it is time for the medical community to accept that, aside from the generalized tests such as high IGE levels, thyroidal issues, H-Pylori infection, etc., we, as patient know our own bodies—we know if we have angioedema! We swell up–eyes, lips, tongues, throats, genitals, intestines, bowels, limbs, and even the brain! We get hives (some may have had prior issues with urticaria but may now be predominately angioedema sufferers)! We can’t breath (even though our oxygen levels may read as normal)! Swelling can happen below the surface as well and this can be so frustrating to explain to people who work in a field of wonderment but refuse to accept the possibility of it all.

When I was last hospitalized, my white cell count was really high. When I’d researched it–iPhones can still be good for something–while still in the hospital, ‘sources’, were saying it could definitely be stress related, or if you are having a strong adverse reaction to something, such as meds, other health issues, etc., and that you could get it back under control. The thing is, when I’d gotten to the hospital the night before, my blood work had come back normal so when they told me this, I told them to check it again because they were the friggin’ cause! Geez, I can laugh just a teeny bit now but it was stressful, then! I’ve had several, really extensive blood workups done by both my GP and my rheumatologist since then and, other than issues of malnutrition (of course that’s gotta change soon!) my blood work came back normal, as I knew it would!

As a New York State Certified English Teacher, I know that, as in most professional capacities, teachers are regulated to re-certify according to new materials, methodologies and technologies, being continuously introduced to the profession. Is this not the case for medical professionals to maintain their status as MD?! It should be as unacceptable for doctors to not keep abreast about what is happening in the world of medicine, TODAY and they should be held accountable for unreasonably remaining unawares of new protocols! We’ve got our work cut out for us with trying to get some notoriety and respect for angoedema and I can only hope that our outreach efforts will impact the right people to help save the many of us who are searching for safety, compassion, and for goodness sakes let’s move back to it, already, the doctors’ need for continuing education, in medicine!

 

#TheAllieBarnettStory | #TheLifeWithoutAForkIdiopathicAngiodemaAdvocacyGroup | #MayYourSwellsForeverBeMinimalatMost |                                                   #VanessaWilliams | #KatyaWilliams | #ChillWill | #KellyHilaire

Source: Angioedema Global Medical Crisis Board

 

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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