#Shareyourrare #rarediseaseday 2024

 ​Hello.  My name is Larry M. Klukaszewski.  My friends call me Larry Klu, Larry K., or simply Klu.  I'm an artist and a retired teacher.  My rare disease is Paraneoplastic Syndrome or PNS.  PNS is a syndrome (a set of signs and symptoms) that is the consequence of cancer in the body, specifically due to the production of chemical signaling molecules by tumor cells or by an immune response against the tumor itself.  Basically, my body has unleashed a powerful assault on the cancerous invasion inside of me and has kept it from metastasizing (a good thing).  However, my body has also turned against me, in a particular way.  You see, my system's powerful immune response, while attacking the cancer, has also begun to wreak havoc on good tissues, specifically in my brain, which has caused all sorts of physical and neurological trouble for me (a bad thing).  This is truly what happens to a person with an autoimmune disease- your immune system mistakenly attacks things it should not.  Although I've only been officially diagnosed for five years, I know that I have been dealing with PNS much longer than that.  I began telling my wife years ago that I was in the very early stages of CTE, due to many years of tackle football and being a baseball catcher from little league to Division II college baseball.  I was becoming very forgetful and experiencing brain fog along with cognitive decline.  Little did I know that I was dealing with an extremely rare disease that would forever change my life.  It was then, that we sought out medical advice.  It would never be possible to fully explain all the ways that my condition has impacted my life...the list would be too lengthy.  Many times, folks who suffer illness only focus on the challenges and this is certainly understandable.  Believe me, I have many obstacles to overcome on a daily basis.  Still, I choose to dwell on the positives that have emerged during this trying time:  I have come to lean heavily on my faith and I pray incessantly for myself and others.  I have felt love and support from friends and family like never before.  I have discovered inner strength and fortitude that I did not know existed.   And, I have developed a deeper awareness of the sufferings of others.  These things fuel and inspire me for my battle and journey.  Though my disease is not curable, I'm young enough at  53 that it is manageable, with intense daily effort, and I have resolved to NEVER stop fighting.  My many doctors and nurses are brilliant and caring and have quite literally saved my life.  I am thankful for my treatments- Immunotherapy, Chemotherapy, Physical Therapy, Pain Management, and TMS brain stimulation along with many modern medications for my disorder.  I train as I am able to stay strong mentally and physically as there was a time when I was not.  Your prayers are welcomed, appreciated, heartfelt, and cherished.  Please keep them coming.  I speak HUMBLY from my heart as I close by saying...I am a rare disease survivor and warrior...a proud and strong POLISH WARRIOR, much like my ancestors who rode into battle centuries ago with shiny armor and majestic wings, waging war against seemingly insurmountable odds and placing all their trust in ALMIGHTY GOD.  Thank you for taking the time to read my story and may God bless you all.  With great respect; yours truly, Larry