I don’t think I have enough tubes.
Not to downplay the heartache and suffering that people with milder forms of asthma have to sometimes contend with; obviously it’s a big deal when you can’t breath, but the healthcare establishment needs to stop lumping all asthmatics together under the same general heading of “asthma”.This is a problem because severe asthma is not the same as mild asthma. In fact, some of the latest research suggests that severe asthma is not just a souped up version of milder asthma, but rather a different disease entity altogether.

Severe asthma is much different than the more common, “blue inhaler” controllable type of asthma. Treatment options for severe asthmatics are much more limited and the long term prognosis is often dismal. What works for the majority of asthma patients has little or no impact at all on the more severe patients. And while even mild and/or intermittent asthma can kill you, those with the severe form of the disease are at a much higher risk of death and experience a lot more suffering throughout their lives.

Today about 90% of all asthmatics (who are accurately diagnosed in the first place) have a relatively mild form of the disease. These milder forms are for the most part, easy to control with proper medication compliance and trigger avoidance. But, about 10% of the asthmatic population have a severe form of the disease that responds poorly to treatment and usually only gets worse over time. This means that there are close to a million people in this country alone who are suffering with a form of asthma which is poorly understood and therefore under treated and/or mis treated all together. You hear very little about this very severe subgroup in the media or medical circles and that needs to change.

There really needs to be a totally separate classification for those with severe asthma and I know I’m not the only one who feels this way. Just ask my Pulmonologist Dr Sally Wenzel. She treats some of the most severe and complicated asthmatics in the world. They seek her out and other researchers like her, because they dont know where else to turn. In my experience, most primary care Physicians and even some Pulmonologists don’t really understand the more severe forms of the disease. My friends and I sometimes joke that we need to come up with a different name to differentiate the more severe forms of asthma from regular asthma. Something like “Super Asthma” or “type 1&2” or type “A&B like they have for Diabetes. Maybe a name change is not as far fetched as it sounds. More and more severe asthma researchers see a benefit to a separate classification and within the next few years you’ll see asthmatics classified by their specific phenotype instead of a severity scale.

The bottom line is that people with mild to moderate asthma tend to live fairly normal lives in between the occasional flare up, people with severe asthma don’t. People with severe asthma are symptomatic almost all the time. They experience more frequent, more severe and more prolonged exacerbations that often require hospitalization. People with severe asthma tend to develop permanent lung damage over time, mild asthmatics dont. People with severe asthma tend to have a lower quality of live and suffer more side effects from the medications than those with milder asthma. People with severe asthma rack up much higher medical bills, which costs everyone.

No one really knows why some people develop the more severe form of asthma and that’s why continued research is so important. With knowledge gained through research projects like SARP, the future of asthma therapy will be all about targeted therapy based on phenotype. Instead of treating all asthmatics the same way with the same drugs, your specific type of asthma will be identified and a tailor made treatment plan will be created just for you. At least that’s the hope.

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2 thoughts on “Not just Asthma, Severe Asthma!

  1. Judy says:

    I can understand the frustration with being treated only by the common diseases/cookie cutter approach. I’m not saying I have severe asthma, because I guess it all depends on how a person defines it. I’ve been diagnosed with asthma based on pre and post spirometry with rescue meds, among other things, but other things don’t quit line up. I was doing vocal cord dysfunction exercises (never been diagnosed and speech therapist was doubtful I had it, but doesn’t hurt to try), and tried them the last time the peak flows went down, but the breathing only got worse. I took some Levaquin, and the breathing cleared up within a few days. It’s hard to tell one thing from another respiratory wise because so many things present the same. Prednisone also improves breathing. However, it seems to really get an answer its best to go to someone who is interested in a specific research area, and that can be hard to find. All I know is I’m telling the truth when I report symptoms. Then left hip starts hurting and MRI is scheduled, but if it doesn’t fit the cookie cutter approach of what physicians expect to see, then I don’t know what to do with it. A friend’s wife is a medical researcher, and she said that problem is very common among physicians and you have to find someone who is interested in that particular rare phenomenon and pointed out how syphilis patients were first considered mentally ill because they didn’t fit into the predominate understanding of their time. Anyway, good luck to you and best wishes.

  2. Krystie Gruppuso says:

    I was having severe asthma symptoms when I lived with my chain smoking stepmother and father I was constantly using my inhaler in school at least 2x 3-4 puffs and using albuterol nebs and in and out of the er. I was having severe shortness of breath, chest tightness, pain on sides when breathing, dizziness, coughing, wheezing, retractions. I was only 18 at the time. It has taken my lungs 9 months to heal. I was on inhaled steroids and constantly on prednisone, I am now working out everyday at the gym but I’m scared that my asthma could get bad again. Is there a possibility that my asthma went into a sort of remission? I don’t use my inhaler much now I use zopenex 45mg inhaler. Please write me back

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