Yes! I have this rare degenerative lung disease called; "Mounier-Kuhn Syndrome".
I was diagnosed in December/99 by an entire team of specialists and a pathologist in Vancouver, B.C, Canada after a medical team at a prior hospital could not identify my illness.
From there, I was subsequently listed as number 83 since 1946 in the entire world with Mounier-Kuhn Syndrome!
I have also developed three lung diseases aside from MKS, for it predisposed me to;
- Bronchiectasis
- Emphysema
- Pulmonary Fibrosis
In ten years of walking this often lonely journey, at last, during this year of 2010, finally we found three others who have also been either diagnosed with the same MKS, at varying stages of the disease, and found out about one who sadly passed away at a young age two years ago.
Anyone living with a lung disease has experienced the physical disabilities associated with its specific diagnosis, and sometimes - accompanying end stage prognosis.
But it goes way beyond that!
Imagine how it was for me being diagnosed with a lung disease that only had one internet page of reference information when googled ten years ago, one page with only seven links. That's it!
Now, in 2010, there are hundreds of pages filled with links, mostly containing the same repeated information, many are locked medical reports and almost useless additional links with crummy information to ultimately benefit the non-medical lay person.
I have come to accept my lung disease as being so rare, and understand my only two options in my future, only two; pulmonary failure or double lung transplantation. These were announced to me initially as my only prognosis, and continues to be the reality now that I've had my first meeting with my transplant surgeon in June/2010.
Lung disease can become a gift to the person inflicted by it.
Real life offers everyone joys, hopes, and the chance to live fruitful lives with an abundance of grace and charity. Why then should that change after a tough diagnosis then? It doesn't have to.
Speaking as someone with "Mounier-Kuhn's Syndrome" and the additional degenerative lung diseases I have all caked onto my lung walls and linings, I'm here to tell you every single new sunrise for me, has fast become yet again, another gift, celebrated sometimes on toughest days by only single "moments".
Moments then, rather than whole days are also gifts well cherished.
- How we spend those moments will be our legacy someday.
- How we deal with our human suffering could possibly become a testimony to others, offering support, encouragement and a hope for all things to come.
Welcome then to my humble and continuing medical journey, my "Mounier-Kuhn Syndrome Journey" via this blog.
Life is good!
