Why is invasive aspergillosis such a difficult disease to diagnose and treat
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- čas přidán 13. 09. 2017
- Added on 10-Mar-2010 Duration: 0:20:18
Talk by Marta Stanzani - At the Aspergillosis for Patients meeting in Rome, Feb 3rd, 2010. - Krátké a kreslené filmy
My mother got this and we were surprised as to how fast it spread from a severe headache to bulging of her eye to losing her eye in a matter of day. It was a relatively early diagnosis and treatment started with amphoterrible that really had severe side effects with no stop in progression of the disease. Voriconazole also didn't help. It kept spreading until she got hydrocephalus and was in a state of semi consciousness. Eventually we started on itraconazole and alternative treatments and continued for a couple of years with VP shunt installed to get ber consciousness back. She has recovered although bad ridden with multiple nerve issues particularly affecting her speech. She is a centre of our world and it really turned upside down after the disease. But as a family you have to keep fighting and outcome will be in your favour.
Whos here to learn more about this?
Wonderful and very clear presentation. Thanks so much Dr. Stanzani!
I was diagnosed with invasive Aspergillosis and disseminated tuberculosis along with asthma and intestinal obstruction. It has been 6 years now and I am finally getting better. With care and instant diagnosis as well as timely medication, I survived. Even though I have certain underlying health issues that resulted from aspergillosis and TB, I am lucky I made through.
Recovery is possible
@@tusharkhilari1897 Yes, it is. When diagnosed on time and with proper medication
Good to know. Take care
I have aspergloma in my lung can you help me how you recover please or just replay your phone number
Hi, my kid is having invasive Aspergillus...could you let me know where u got treated and if you have any Dr recommendation..
Thank you Dr Stenzani I love your beautiful Italian accent. Avian Veterinarians could possibly help with your studies.
which serological studies can be done to detect aspergillosis? Good talk
Sadly only mycologic culture, which most labs don't do properly, the Aspergillosis hospital in Manchester says 3+ weeks of growing a culture to diagnose, while most labs give it maximum 5-7 days, and that explains why you have so many false negatives. Another instrument (not recognised by conventional medicine) is the mycotoxins panel, that will see what kinds of mycotoxins you have in your body, and that can give indications about which kind of fungus one is dealing with, but the test cannot distinguish between mycotoxins coming from the environment and mycotoxins from actual mold colonisation, so it s not conclusive. Otherwise you can do Igg and Ige test to see if you have an immune response against the mold, but it's usually available only for Aspergillus species, so if you have a different mold they won;'t see it.
Ok, but can anyone explain why they don't want to treat it BEFORE organ damage appears (apparently the only thing that will warrant an antifungal prescriptions, according to most "specialists")? Dr Denning's studies demonstrate that early treatment has almost always a favourable and DEFINITIVE outcome, can someone explain me why doctors refuse to treat it until it s untreatable? It s really shameful, I don't understand how these people sleep at night, so many lives completely destroyed, one really wonders why. Is it because when you treat it in the beginning you use antifungals for one year, but once it s untreatable you need antifungals and steroids for a lifetime? Is this the reason why they don't want to diagnose it earlier, to sell more medicines? I am in all the Aspergillosis patients groups available, all the stories are horrifying and heartbreaking. Shame on these doctors.
I would not completely agree with this. In most invasive aspergillosis cases, including my own, the diagnosis is really hard. Aspergillosis is the type of fungus that cannot be easily diagnosed, as it has the characteristics to hide, until it starts damaging the organs. Most of all, it's symptoms are similar to other lung conditions like TB (I also had TB along with IA), which makes it difficult to unmask. And with my experience I can say that, especially in developing countries, the resources and technology to diagnose IA is not easily available. Moreover, with the rare nature of this fungus in humans, the research and awareness is limited, not to mention the high expense in diagnosing this issue. The antifungal medicine (voriconazole) itself is extremely expensive for any middle class person to afford.
@@TheKhush21 the diagnosis is really hard first of all because the doctors don't listen to the patient's story, and secondly because, as Denning points out in every single paper of his, the standard colture is usually inadequate, and the diagnostics suck. When a patient says that all of their symptoms started right after inhaling a mold, (by the way, there are lots of molds that can inhabit the human body, not just Aspergillus) and symptoms that coincide with a fungal infection (changes in sputum color, smell, and density), a child would understand that the cause is some kind of fungal infection, but not allopathic doctors - instead, their criminal diagnostic guidelines state that until there is organ damage they just have to wait and let people suffer until they are incurable. Now I don't know if those murderous guidelines are a consequence of some really inadequate testing practices, together with total lack of common sense, or if they are a leftover from the times (30 years ago!) pre-azoles when antifungals were more deadly than the fungus itself and nobody took the time to update them, OR if we want to go into conspiracy theory territory and guess that some powers are happier when millions consume antifungals and steroids for many years as opposed to 6-16 months, that I don't know. All I know is that thankfully in the ND/ so called "mold illness doctor" community after Dr Nathan's work it's becoming more common to prescribe antifungals without waiting for the patient to be half dead before taking action. Conventional doctors should be really ashamed of themselves and should stop destroying the lives of people just to "obey orders". If they ever had a brain before getting their medical diploma, they should start using it and look at the actual facts to make a diagnosis.
@@sallybowles2781 aspergillosis is a type of fungus that is present everywhere, yet few are affected by it. Being an invasive aspergillosis patient myself, i know what you are explaining here is not how it works.
Anyways, I hope anyone affected by this deadly disease is diagnosed in time and treated well
@@TheKhush21 what do you mean it's not how it works? mold colonisation can be invasive and non invasive, and it's not as rare as they say it is. Non invasive can go on for years without being deadly, as as anyone with Aspergillosis can attest, it's not a great life. The current diagnostic criteria are criminal and seem to be created to make sure that people are not diagnosed while they are still treatable.Things must change.
@@sallybowles2781 you are right I just been through hell for the past 4 months . They allowed the infection to spread to both of my lungs before they would even do a bronoscopy and now they tell me I have this after fighting for months to find out what this is
The audio is very poor, couldn't hear this very well..
The problem has to be at your end (either configuration or hardware fault). It is not a fault/defect of this CZcams video.
Why even post. Inaudible.
The problem has to be at your end (either configuration or hardware fault). It is not a fault/defect of this CZcams video.