Kenze's Fight With a Rare Disease

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 I am Kenze Messman. I am 18 years old and just graduated High School this past May 2019 at Waverly High School in Waverly, NE.. I was a gymnast, varsity cheerleader, swimmer, and I enjoy hanging out with all my friends.

Since birth, I have had some pretty bizarre medical issues, but in June of 2015, I had an allergic reaction to something unknown and this reaction changed my life. Initially, doctors thought we might not ever know what this first reaction was caused by.

However, by that October, I experienced seven more anaphylactic reactions, including 7 ambulance rides from my school in one week. I was reacting to literally everything from the sun hitting me, to heat, to stress, being too cold, to strong smells, to most all foods, and weather changes.

I must be cautious of the vibrations from car rides to and from doctor visits.  All in all, you name it.. I will react. I am was unable to attend school, but in lieu of attending classes, I  did online high school classes.

After what seemed to be a million visits to doctors here in Lincoln, in Omaha, to the Mayo Clinic in Rochester, MN, and then finally Genetics, I was diagnosed with a  rare trio of conditions called hEDS, a connective tissue disease that causes the Mast Cell Disease  and POTS. (Postural Orthostatic Tachycardia Syndrome)


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To explain in brief, hEDS, (Ehlers Danlos Syndrome - hypermobility) is a genetic connective tissue disease that is causes all this mess.  It also causes my joints to dislocate sometimes multiple times a day. 

Mast Cell Disease, causes me to have severe allergic reactions to just about everything. I have spent a lot of time in the hospitals and ER’s since September of 2015. (Probably more than anyone could count) I am currently taking a TON of antihistamines, and I am also on a 24 hour Benadryl regimen which means at times I am taking Benadryl every hour to prevent anaphylaxis.

With the POTS my blood pressure lowers and my heart rate goes extremely high. So high that I pass out, have seizures, along with slow motility, and gastroparesis. 

It has taken so much to keep me safe. My mom, dad, sister and brother work so hard to keep me in a safe environment. We have redone most of our home, with the help of Chive Charities, and my doctor has joked that I would react even if I was put into a bubble.  The medical costs, specialized food, added trips for medical care, medical equipment and specialized equipment have made it difficult for the entire family. 

I pray everyday for hope, research, and awareness.  We will use the money for travel expenses to my out of state doctors visits.  (Usually 2-3 a year), medical bills, and medical equipment as necessary.  
I am incredibly blessed and thankful for all prayers and donations!  Thank you so much!!!35492234_1545526426158550_r.jpeg

Donations (0)

  • Gabriel Orrico 
    • $200 
    • 1 mo
  • Anthony Caputo 
    • $108 
    • 1 mo
  • Anonymous 
    • $20 
    • 1 mo
  • Myron Ledvina 
    • $100 
    • 2 mos
  • Karen Giddens 
    • $50 
    • 2 mos

Organizer 

Angie Parde 
Organizer
Lincoln, NE
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