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Kenze's Fight With a Rare Disease

$7,632 of $40,000 goal

Raised by 108 people in 7 months
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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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Happy 4th of July weekend!!!!

My birthday was the other day and this holiday always is fun! I used to think when I was little that all the cities were celebrating MY birthday all for me with the fireworks :) HAHAH!

I got home from New York last week from seeing Dr Dempsey, a Mast Cell specialist, and she was absolutely amazing! Travel is tough on me so I’ve been resting a lot since the trip.

Dr Dempsey ran a TON of tests. She has to get to the bottom of somethings regarding my health that haven’t been answered clearly.

With EDS, the MCAS is the major driver in many of my symptoms including the POTS but we still need to make sure all the pieces are put are put together.

For one, my seizures... yes MCAS and POTSs could be the cause BUT we need to make sure nothing else is causing them. -- My doctors have never ordered a EEG so we have nothing to go on.
—chiari malformation
—epilepsy
— pots and what the heart is doing
I will be seeing some specialists here and in South Dakota for these during July.
MCAS is very autoimmune driven so she tested for more autoimmune besides my hashimotos that I have.
She said there is still missing pieces to my diagnosis’s. (POTS, EDS, MCAS, Hashimoto’s, and gastroparesis)
Things that she believes are going on on and driving these mast cells are:
*Small fiber neuropathy
*HyperPOTS (Autoimmune POTS) ...with a likelihood Autoimmune Autonomic Neuropathy.
Tick infections or co infections (possible not necessarily Lyme)
If all these are normal... she said she can still treat the trifecta better than what is being done!
To begin, I am to start doing my infusions everyday instead of 3-4 times a week. A new medication for my gastroparesis and a new medication for chronic diseases that are great for autoimmune, pots and mcas.
For the first time I feel that hope that my mom has always had in each appointment and new doctor and I’m so grateful she didn’t give up! Even with all my eye rolls and disbelief.
Thank you ALL for the support, prayers, donations, and love! This appointment was completely out of pocket and it would not have happened if it weren’t for ALL of you! THANK YOU FROM THE BOTTOM OF MY HEART!
#mcas #eds #pots #gastroparesis #chronicillness #finallyhope
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Medical update:
My doctors have me on a new medicine so I didn't have to get my feeding tube! I'm keeping food down so I am So GRATEFUL!

We are heading to New York this weekend to see a top Mast Cell specialist in hopes to stabilize me and shed answers to even more. Travel is hard on me but I am praying all this is worth it! She comes highly recommended. My mom is going with me and when I return it will be my 18th birthday on July 2nd!

I will then see a special cardiologist later in July to hopefully shed light on all my seizures. My heart rate gets up to 233 bpm before I start to seize so they want to place a loop recorder to see what else is going on with my heart. EDS has a lot to do with the heart and the surrounding connective tissues.

Thank you all again for everything!!! All the prayers, donations, and support!! Please keep me in your prayers this next week! I'll update soon!
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Just wanted to update all my followers and supporters!!! I just celebrated a huge accomplishment... I graduated high school a couple weeks ago! I had a goal to walk and make it through the whole weekend and I did... I was so grateful!
I have been recovering from such a huge weekend though and it has been tough but I'm hanging in there.

I have to make some pretty tough medical decisions based on my gastroparesis. It has worsened and weight loss is becoming an bigger issue. Please all pray that the new medicine works and I don't have to get on a feeding tube. That is the last thing I want to happen right now :) Thank you all again for your prayers, donations, and support. Love, Kenze
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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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Raised by 108 people in 7 months
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