Mastocytosis

Mastocytosis... I could write a book about this illness and how it affects one's life. I should write a book about this illness. Unfortunately, I really don't have the energy to write a book. It is time to expend what little energy I have left on me and for me (yes, it is my time to be a bit selfish)... for my immediate family... for those closest to me. I've spent decades serving others including others with this illness when I was newly diagnosed but now it is time to be a bit selfish and devote my time and energy to me and my family.

The purpose of this page is to provide some information about this illness in all of its forms. I'd like to also add helpful links and resources explaining this illness but cohesive information on this illness is hard to come by even in today's universal virtual world. The information that is available online is far better today than when I was first diagnosed with this illness though. Hence, I have some useful links at the bottom of this page as well as a 30 second video.

So, I've compiled a list of informative links, below, to try to keep this as simple as possible for now. Finding appropriate links can be difficult, however, because this rare illness can be varied and complicated affecting different patients differently while also being hindered by all sorts of secondary illnesses and problems, diagnosis can be a long and difficult process. Finding information online about this illness can be hit or miss when it comes to how it affects just one random patient so I've included many links from my own blog which explain my own experiences with the illness, the struggles, the symptoms, and even some of the good times in between the struggles.

I've had this incurable disease for decades now so I can say with absolute certainty that there are good days and there are exceptionally bad days, weeks and months. My advice is to try to focus on those good days. Laugh as often as possible (I watch only comedies now). In short, I think the key to moving forward with this disease is to continue living your life as best as possible and not dwell on all the painful, debilitating bad times. If you are feeling well enough, then get out there and do something productive. If you skim through this blog, you'll find that this is how I live my life today. I should point out that I do have far more bad days than good days... I just don't write about all the bad days.

Clearly, some of the info provided below as well as information gleaned from this blog could benefit patients but I also feel very strongly that it could benefit caregivers, family and friends of those struggling with this debilitating illness. One thing I have always said is "when one person in the house is chronically ill, everyone in the house is chronically ill." Everyone in the house... everyone in the family circle... is affected by the chronic illness of one patient in one way or another so understanding is very important. Understanding comes from accurate information. Because of this, I hope healthy people will also read these pages to try to better understand the life of that chronically ill patient in their life. With true and deep understanding comes a bit a dignity and "normalization".

Below is a 30 second video showing an accurate documentation of my life with this disease. And, below this video are some links with information specifically about this disease, if you are interested in learning more.

Until I add specific information directly to this page (which, let's be honest, I'll probably never find the time and energy to do), here are some links with helpful information:

The Mast Cell Disease Society

The Mayo Clinic - Systemic Mastocytosis

Indolent Systemic Mastocytosis

Annals of Internal Medicine - Indolent Systemic Mastocytosis

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Scattered Thoughts . . .

Mastocytosis

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