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