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Kenze's Fight With a Rare Disease

$6,412 of $40,000 goal

Raised by 86 people in 1 month
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 I am Kenze Messman. I am 17 years old and a senior now 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 now unable to attend school, but in lieu of attending classes, I  do 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
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Hi everyone! I wanted just wanted to tell everyone thank you so much for all the prayers, support, and donations. I am responding to everyone as fast as ai can but I haven't been feeling the best so please be patient if you messaged me directly on instagram or facebook.

Because of you ALL we are going to be able to see my Mast Cell Specialists in New York that you probably heard and read about in the PeopleMagazine Story and video. Dr. Dempsey and Dr Afrin who are Mast Cell specialists. I have never been able to see them due to the cost but my allergist in Omaha has worked closely with them on my case. So Thank you so much!!! The out of pocket costs just to see them is around $5000.00 and they don't take insurance... plus travel costs and hotel, if it helps me its going to be SO worth it and Dr. Dempsey is also a Functional Medicine doctor so it will help with another area in my care team.

Since I am unable to message directly to respond to the comments and messages through here directly, I wanted to help answer some questions you have had for me.

I have a genetic connective tissue disease called Ehlers Danlos type 3 and classic. EDS causes the mast cells to activate and also the POTS. I have also autoimmune Hashimoto's disease and am being treated for that. My diet is a low histamine diet that consists of clean no preservatives and dairy, and gluten free. (Unless I cheat) YIKES! But I am a teen and sometimes its hard when I'm with friends. :) My mom is a holistic health coach and knows nutrition and definitely harps on my nutrition. :)

I have have been tested for Lyme however, I was tested at the Mayo Clinic and not Lyme literate. I will be tested when I go to New York because Dr. Dempsey is l a lyme literate doctor and will address that if I happen to have it or other tick infections.

I did not receive any HPV vaccinations. I have happen to have symptoms all my life including infancy so we believe that trauma due to surgery caused a lot of symptoms to flare to this degree.

Since the People Magazine I have been able to help so many people. I am so grateful to raise awareness and be an advocate. My story has also been on All about Dogs, Daily News, Daily News UK, and Channel 10/11 news. Soon it will be in the Omaha World Herald and also another exciting entertainment network that will becoming soon to film. I'm so excited! I am so grateful and hope that it helps others, and raises awareness and funding for research!

Hope this helps and thank you all again for the support, and the prayers and donations! My family and I are incredibly grateful!!!

Love, Kenze
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Thank you all for the donations, messages, and prayers! We are all so grateful! The People Magazine has brought me incredible people like you all and many many resources, new friends, ideas to take into consideration on my healing. Thank you all so much!!! I am so grateful for everything!!! Love, Kenze
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