It is easy to stare at a blank screen and not know what to write. It is easy to have days where you want to say, “Why me?” It is also easy to see how lucky you really are.
At two years old, I never wanted to have a tumor that was the size of a silver dollar pinching off my intestines. I never wanted to experience a colonoscopy. I never wanted my intestines to come out of my body after an accident with my first colonoscopy (due to my small size).
You would think that one experience would be all a small person would experience in one lifetime. But then again, you would think wrong. After this, my life was surrounded by doctors.
I had many colonoscopies after this. I also found out I had tumors surrounding my heart. A cyst on my brain. Many skin cancer close calls. I had to have a surgery to remove something called a Connective Tissue Nevi removed from my shoulder. Also, I have had about 3 surgeries to remove another tumor under my arm, and one surgery that was supposed to remove a tumor from my stomach.
I could cry and say a kid should never have to teach themselves to fall asleep in an MRI machine with my head taped down and my knees up. I could say that it’s not fair to wake up in the middle of a colonoscopy with 22 tumors being removed and still have the doctor inside of you, burning out more. I could be angry that I have weird little bumps on my face that every doctor I see wants to remove and test. I could even say a higher power doesn’t like me, to want me to have constant stomach pains and feel tired all of the time.
BUT I WON’T!
Yes, I have a genetic disease that affects 1 in 200,000 people. Yes, I am the only person in my family to have this disease. I am told there is a good chance I will have cancer in the future. I am also told I should have check-ups every six months.
My genetic disease is called Cowden Syndrome. And it WILL NOT define me.
I have a future that I can see is bright. I will fight for a difference and a change. My life could be so much worse and severe. So, yes, doctors know little of my disease, and they see me as “sick.” But I see me as Jessie.
As Jessie, I am a wife to an amazing husband. He steps in to show me that just because life can be bad sometimes, it does not mean you have to give up. I am an Aunt to a group of amazing kids that make me smile every day. I am a sister. I am a daughter to parents that love me and would take my disease from me if they could. I am a writer. I am a friend. I am so much more.
I will fight. I will start a charity for funds for research. And I will try to make a difference for the day I have children. I will fight for my Husband. For my Family. For my future.
Yes, my future children would have a 50% chance of receiving my genetic disorder. But I will never give up.
I have been guarded in sharing my story. I don’t like how people look at you when they find out you’re a little “different.” But without sharing, how can I make a difference?
To those of my brothers and sisters out there, put up your fight. You are a hero in my eyes. God bless each of you.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
Be strong my friend…I have Cowen syndrome. UR NOT alone.. I Had An mri.chest..IN MY RIGHT side..Found several masses they don’t know if cancer or no…I’m wating on biopsy results
Thank you Claudia. I pray your results turn out okay.
You are both so brave! I am awaiting test results to see if I have cowden syndrome (it’s looking likely!) and I’m scared of what lies ahead! It’s refreshing to read how people just get on with it x
The great thing about medically technology is it gets better with time. Hang in there.
Hang in there! I hope your both doing great.
Out of the blue I found out I had Cowden after my dad wasdiagnosed…He was 68. I am 40.i don’t know much about it..although it does explain some issues in my life
I also have Cowdens and I have just had my 20th surgery , and have had a long list of tunours removed. I would really appreciate speaking to someone who understands what we go through. I live In Sydney Australia
Feel free to e-mail me anytime my personal e-mail I use is JRobbins18@capellauniversity.edu