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Never thought I would see the day that I would be writing on Google about my dis-motility disorders. Well here goes, I have sooo many dis-orders, that the Cleveland Clinic and Mayo Clinic have both told me there is nothing they can do for me, at the age of 50, am now 55.I now am on TPN, probably for the rest of my life, because when I eat, it stays in my stomach and intestines and ROT’S and I then end up in the hospital because the pain is horrendous,so I am hooked up to a bag of formula, much like baby formula for 12 hours everyday. One of my disorder’s is, “decreased myenteric interstitial cells of cajal, they are to the digestive system what a pacemaker is to the heart, hopefully that explains enough for understanding my condition, so rare that there are only 3 doctors in the U. S. who know anything about this, go figure!!! Anyways, I make the best of each and every day. I am watching my grandchildren grow and come in to this world, how fortunate I am to be able to know them, god has blessed me for sure. If you are suffering, please don’t’ give up, keep on fighting, we are the only chance that future patients have for any type of relief, or possibly a fix so good that they will be able to function with out the miss-haps we have had to endure. My daughter, and so far one of my granddaughter,s have bowel disorders, if I quit, what have I done for them???Do we need more investigation and funding in this area, definitely, and it’s going to take us to make sure it happens. If anyone reading this knows where I can be an advocate or tell my story so hopefully it can make a difference, please let me know. Thank you for listening and God Bless!

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