Your help is needed for the FIRST large-scale survey on MGUS and SMM patients’ experiences and quality of life

About a week ago I was contacted on my blog’s Facebook Page (see: goo.gl/FQrMQ9) by a Ph.D. student at Queen’s University in Belfast. He asked for my help in getting SMM and MGUS folks to participate in a survey focusing on premalignant conditions, which will be part of his thesis. In a nutshell: he needs to reach as many SMM and MGUS patients as possible.

He is mainly interested in SMM and MGUS patients’ quality of life, how we were diagnosed, what is our level of care, and how we reacted upon receiving our diagnosis.

He wrote: “This is the first large-scale survey on patients’ experiences with premalignant conditions and the plan is for it to be published as a research paper and a component of my PhD. We also plan to produce a summary of the findings for patients to read when we finish.”

He and his team hope that this information will be able to help medical staff to provide the best standard of care possible. That would be really super. I remember being so confused at diagnosis (both MGUS and then SMM), not really understanding what was going on, and so on. It would have really helped to have gotten a bit more information, solid information…

And another thing: when some of the top myeloma experts in the world told me that there was nothing I could do to stop or even slow down progression to full-blown myeloma, except sit back and WAIT, I really did lose hope for a while. Luckily for me, I’m an optimist, so I soon decided the experts were WRONG and began doing a lot of research.

More than 12 years post-diagnosis, things are completely different…for me…But I’m afraid they are not so different for a lot of patients who receive a premalignant diagnosis and are left with no hope…

Of course it would be negative for doctors to give patients false hopes (“oh, everything is going to be fine”…that sort of hogwash). But to take away their hope is equally as bad…Remember David Servan-Schreiber and “false hopelessness”? Exactly.

In a premalignant condition, there is definitely HOPE. And, as I think I have proven throughout the years, there are also a lot of things we can DO. We do NOT have to sit back and fret. No…We can be proactive…in a natural way…I mean, c’mon, we just found out that meditation might have an impact on our progression genes! So much is changing…so much is going on…It’s rather exciting, I must say…

Anyway…

Sorry, I got a bit carried away there. Back to the Queen’s University survey now. I took a few days to think about Blain’s request, since I’ve never publicized anything like this on the blog.

The first thing I did was take the survey myself. I’ll warn you: it takes a while…or at least, it took ME a while, since I had a lot to say (imagine that! 🙂 ). But if you aren’t interested in writing entire dissertations the way I did, practically, all you have to do is say yes or no to the various questions, and that should cut your time in half, at least.

Besides, it’s worth it…It’s an interesting survey…

Okay, enough said! Let’s give Blain a hand, shall we?

The results of this survey could be very IMPORTANT for future patients, but if we don’t take the survey, Blain and his team will have very little to go on, right?

Besides, it’s FREE…won’t cost you anything!

Here’s the link to the surveygoo.gl/EsT7Ki

If you are connected to Facebook, you can follow the study/survey’s progress here: goo.gl/v32Es2 

Okay, that’s it! Thanks for your help!!! And please don’t forget, TAKE THE SURVEY!!!!!! 🙂

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