Bringing awareness to MKS

Apologies for the delay in posting here. 

May we extend a sincere new year greeting to you and your loved ones for a bright and healthy 2011. 

Here's to bringing even more exposure and awareness to MKS.

Happy New Year!

Please be assured in our absence of posting for a time, there has been much happening behind the scenes. We hope to reveal details on something new and exciting right around the corner, tweaking ideas and possibilities to create a more interactive type of website for those with "MKS".

Over the past while, it has become emotionally happy for us as we've come to the conclusion on the reality that this blog has created baby steps towards a sorely overdue platform for bringing awareness to the forefront on "Mounier-Kuhn Syndrome (MKS)". 

With that as our end goal, we will continue to post anything of informational interest to share with others with this same disease, or to assist the medical field with detailed reference items. 

We continue too to receive emails from those who either have been recently diagnosed with the disease, or who have been living with it for a while now, somehow searching the internet in their attempt to educate themselves more, finding us awaiting them here. And we will be here, available to assist (if possible) anyone who comes in contact with us.

In October, 2010 when the "Canadian Respiralogy Conference" convened in Vancouver, B.C., very obviously MKS was not noted on their agenda.

It seems for all intensive purposes, the mighty two lung diseases which seem to carry the most scientific study are; COPD and Pulmonary Fibrosis. In reality though, there may be more population diagnosed with these two diseases, however there are actually many dozen more lung diseases topping "The Canadian Lung Disease's" own lists, and it's mind boggling that still in 2010, MKS has not actually been documented on such worldwide lung diseases informational lists yet.

Interestingly, the same group of Canadian respiralogy professionals will meet up again next month in Niagara Falls, Ontario, so we can only hope a continued possible growing "awareness" of MKS will eventually be brought to their conference forum.

What little information currently rolling round our globe is from people like you and I who have either been diagnosed with MKS, or from helpful doctors of MKS patients trying to get what information they can into their fields of study by way of using medical journals to record them. Truthfully and sadly though, and often I've seen it as the norm, there are some who may be working on a different agenda, hoping to document their findings or patient diagnosis for the purpose of gaining only possible medical notoriety. I'd like to think these are few.

Always interesting; if worldwide medical journals were filled with actual patient findings to offer further diagnostic and practical advice for MKS patients, then one has to wonder why the only prognosis (still many years later), is to only suggest one things - a life saving operation of a double lung transplant for their futures.

While walking the journey of MKS the past eleven years, I can only suggest a helpful solution would be to continue bringing even more awareness to this disease for rendering further immediate understanding amongst every medical field out there from the paramedic to the hospital emergency wards, and permeating through every professional beyond that.

If two Internists, and an entire team of  Respiralogists were initially unable to even read a simple chest xray of my lungs in my early diagnostic stages, then it's obvious continuous education needs to ripple throughout every single department of all medical fields.

Very recently we received the note below, left as a comment to one of our blog posts.

Immediately our hearts went out to the author, because that was us eleven years ago now, grasping anything we could find to learn how to cope with the MKS diagnosis given to me.

 My name is W. and recently my husband was diagnosed with MKS. Unfortunately he was seen (and diagnosed) by the most incompetent medical staff you can imagine. I am desperate to find a doctor that not only treats this, BUT KNOWS WHAT IT IS!!! 

Please, if you have ANY information that may lead us to who we need, it would be greatly appreciated. Thank you so much for creating this page and; I wish nothing but the best for you and yours.

 Sincerely, W.

Our sole comfort for those who may be recently diagnosed like W's husband, is to please be assured - due to the abundance of lack of information available to medical personal, let alone the lay person, this is the sole reason why this MKS blog was born in the first place.

We know there are others like us around the world who would greatly benefit from having an actual support system for our disease, so if for any reason, this is our hope, that we may offer a tangible way to bring something into cyberspace which may assist another with the whole topic of MKS.

With MKS awareness in mind and for this very reason, I accepted the invitation last summer to have a professional photographer follow me around during my regular respiratory physiotherapy session. Photos were taken throughout my workout while following my usual regime and directive from my physiotherapist during the afternoon.

I am told over 250 photos were taken of me, and I was perpetually teased about becoming the new poster boy for the program. If that's what it takes, to have my medical diagnosis made public, and to have my photo taken while I am trying to keep physically active for possibly being able to fend off any bit of continued digression of the disease, then of course I will participate.

To my fellow "MKS" patients out there, I want to issue you a 2011 new year challenge;

How are you bringing further awareness to our shared disease? 

Let's get our diagnosis more known shall we?

If there is something you're currently part of, or you have an idea to get something rolling, we'd love to hear from you. ,

In the near future, we hope to have an informational video posted on YouTube and we have a few other ideas rolling round our heads. Your further suggestions are very welcomed, please feel free to email us with them. er

Also, we will be hosting MKS stories behind a special tab at the top of this blog, stories by and from those who have been diagnosed with MKS, or from a medical personnel who may be currently treating one. We invite your submissions, which we ask to remain anonymous with the exception of sex, age of diagnosis, country and general geographic area. These will be collected and posted here on this blog for others to read for support, possibly finding similarities in cases to further assist the development research for better prognosis in the future. Entries should be to the point, so they aren't too lengthy.

Have an MKS story you want to share with others?

We invite you to bring it forward.