Im going to Pennsylvania to be studied.

AI logo w text

As I eluded to in my last post, Dr. Wenzel along with the folks at the University of Pittsburgh’s Asthma Institute, have taken an interest in my case and have invited me to participate as a research subject in the Severe Asthma Research Program. The SARP is one of the most comprehensive studies of severe asthmatics ever undertaken. My study is scheduled for the 3rd week in November.

The project I’ll be involved in is titled : Inflammation, Myofibroblasts and Loss of Elastic Recoil in Severe Asthma.The Severe Asthma Research Program ( SARP for short), is a collaborative research effort involving 4 different Universities, each adding their own research specialties to the mix. The basic goal of the SARP is to determine what make “severe” asthma different than the moderate of mild forms of the disease. The information they gain by studying people like me, is added to their already extensive asthma database, which is available to lung researchers worldwide.

It’s an exhaustive study, involving several days of testing which includes; full pulmonary function testing and spirometry, allergy testing, spiral CT imaging, blood, sputum and DNA analysis…etc etc. They’re also going to do a bronchoscopy on me to look around inside my lungs and take tissue samples. The only part of the study I’m not too crazy about, is having to spending a night in the hospital following the bronchoscopy. They do this of course, just to be safe and to make sure that my asthma doesn’t worsened after being bronched.

I’m paying for all of my own travel expenses to Pennsylvania, but in return, the research program will be spending 10′s of thousands of dollars in the name of science to see what makes me tick, which I think is pretty cool. And though I probably wont benefit directly from the research, it gives me great satisfaction knowing I can contribute in someway to developing a better understanding of this awful disease.

I think the study is through invitation only, but if anyone out there with severe asthma is interested in volunteering , and can travel to one of the test sites, I’m sure the researchers would appreciate it. Here’s a link to the consent form , which includes many more details of the study.

PS……Remember this one?

Related Posts:

11 Comments

  1. Steve,
    get through all the tests without any reactions is my hope for you, and thank you for being one of the test subjects… those travel costs from CA to PA are a considerable donation in addition to your time… thank for those it may help.
    keep moving,
    Lyn-

  2. kerri says:

    Very cool stuff, Steve! Best wishes with this!

    I'd love to get involved in some research-y type stuff, too, at some point. Keep us posted on all this!

  3. Danielle says:

    This is sooo cool and interesting Steve. I hope you'll write lots more about it. (the DNA analysis intrigues me especially! :p) Good luck in PA

  4. tammy says:

    Very cool. That is awesome of you to do that.

    Speaking of travel, I will be in SF Oct 15-19 to coach Nike this year. Will you be around?

  5. Elisheva says:

    Hey, it's me Elisheva. Don't think I've ever posted here before. Why are they making you pay your own travel expenses? That's not fair. What about room and board while there? Good luck with everything! :)

    • Hi Elisheva. That's just the way it works here in the USA ,but I don't mind because it's for a good cause. Severe asthmatic test subjects that are healthy enough to travel ,are very hard to find. I will receive some money for my participation in the study, which will help offset my expenses. In addition, they are waiving 10's of thousands of dollars in fees for clinical services that they would normally charge for, even to their research subjects.

      As far as Qvar goes, because most of my lung inflammation seems to occur in the smaller airways, Qvar with its smaller particle size, is believed to penetrate deeper to get to those areas. I'm going to try it for 3 months to see if it helps.

      I hope your asthma is behaving.

      • Elisheva says:

        Hmm… Cool. Oh yeah I think I remember them saying something like that too at the conference, about it being small particles. I was one of the only patients there. It was mostly pulmonologists who were full of themselves, but I did get a lot of free stuff and free food :)

        Yep, I'm breathing great! Thanks!

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Got Asthma?

Volunteer as a Research Subject
for the
Severe Asthma Research Program
Need more info? Contact me

Advocasy

Most frequently asked question

"Can you have an asthma attack with a normal sat reading"?
The answer is..YES!
While it's a little unusual to see a person with a perfect O2 sat of a 100% during a severe exacerbation, its pretty typical to see sats in the 94-97% range. The reason for this, is that asthma is a disease of the airways , not the alveoli where gas exchange takes place. Most asthmatics dont desaturate during the early stages of an attack,unless theres a secondary problem such as pneumonia. You have to be extremely ill with asthma if your sats are low.

Racewalking

Winston