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This Young Man Is One Of Two People In The World Coping With A Rare, Nameless Disease | NBC News

Video Overview & Insights

UPDATE Oct 2, 2019: Mitchell Herndon passed away on October 2, 2019. He was was taken off life support according to his final wishes after doctors discovered the disease had infiltrated his brain. He was surrounded by his family, and left in peace according to his mother Michele Herndon.

Sucha handsome and funny guy! Prayers for the family even after all these years πŸ™

β€” @verocameron392

Mitchell Herndon has a disease so rare that there is no name for it. As one of only two known patients in the world, he grapples with a reality that sees him as a case study for doctors who are only beginning to learn about his condition.

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2026 gang... Where are you? ❀

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I hate that they automatically send anyone with a complicated chronic illness to rheumatology. Most rheumatologists only know about arthritis, they don't know anything about fibromyalgia, EDS, POTS, CFS etc.

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This Young Man Is One Of Two People In The World Coping With A Rare, Nameless Disease | NBC News

Spirit of God bless him ❀ Bless his family and friends 🧑
Heal him! Body,soul,mind and Spirit β™‘

β€” @JustEye_La

More User Perspectives

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Rest in power ❀❀❀

@Frenchtoastandeggs
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Doctors probably said it was a psychological or psychosomatic no doubt.

@AnthonyBorgniet
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😒

@debrabright9065
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My goodness, as a dad of 4, to think your kid gets to 12, the sleepless nights are over and yiur kid starts being themselves really. Then to get hit with this, it crushed me

@DudeGetsFit
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God Bless you for sharing your story your bravery and your will to live and defeat your obstacles is a testament for hope faith and life to live and for a cure!

@ms.t6661
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Cool

@YTonYahoo
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❀❀

@ASMR_Orangely
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Beyond heartbreaking...😒

@johnlovin6086
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What a bright young man. ❀‍πŸ”₯πŸ™πŸ˜ΏRest in peace you brave soul. πŸ’˜πŸ™πŸ§ πŸ’ͺ

@brandondean2530
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I hope the girl in Korea is able to treat her disease now that they have found a treatment for it.

@CarpetHater
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RIP Mitchell. Seemed like such a happy kid even w everything going on 😒

@JCpatriots
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I always comeback to see this... Make me grateful for the life I have.
Hope the illness soon have the cure

@banyanya595
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Rest In Peace, Mitchellβ€οΈβ€πŸ©ΉπŸ’”

@Matt-dj1rv
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2025 update – since the Baylor team’s first work, researchers made a zebrafish model of Mitchell Syndrome (ACOX1 N237S) and found a brain-targeted antioxidant called D-NAC that helped with motor and neuron issues. New cases showed hearing and vision loss tied to the same mutation. Bezafibrate still comes up but now the focus is more on oxidative stress and peroxisome problems as the main drivers so treatment ideas are shifting that way (Frontiers in Pediatrics 2024 / Neurology 2024).

@lcgmilllz3514
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I am glad they at least the doctors didn't gaslight your family and had the integrity to say "they just didn't know" Many doctors will just tell their patients they need antidepressants and psychiatric care even though they have a legitimate condition πŸ’Š

@LDuke-pc7kq
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❀❀❀

@elariems1065
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What a beautiful lovely boy. So positive and loving. How sad.

@LiliTruli
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RIP πŸ˜”

@wolfgangxcylo
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What a horrible way to go and there wasn't any way to fix it in time. My condolences to his friends and family. I wish gene editing was a thing back then and wonder if that would of helped with the one DNA gene which caused it.

@CDSDeleting
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I feel like it's a nerve disease

@GabriellaNance
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it's got to be immune related... induced by an environmental exposure..... or the induction of hormones brought on by puberty.... poor people. I really wish all these billions musk is uncovering in waste and fraud they could have used to progress the understanding of just one of these poor diseases that affect these people. They yearn so much to just experience their lives for the entire roller-coaster. And to think he was perfectly normal up to the age of 12....

@Diabolous3x
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β€œ I hope to find a girl who loves me” that brought me down! I am so glad his life is good. Well off parents. Nice living conditions and medical. Very loving and supporting family. I’m glad he had that.

@Abbiedarn
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Alotta football players shoot theirselfs in the chest so dr.s could examine the brain. Its called Concussion its a true movie

@justinpell3760
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it depends what type of state of doctors because not all the doctors not good enough doing their jobs

@tigerlily48
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RIP fly high bud❀️

@benvicks
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He seems to be a pretty strong intelligent young man that has been able to endure quite a bit but alas it is disheartening to hear him talk about wanting to have a child while I think adoption would be absolutely great and I think he would be a wonderful father but for him to actually have a biological child kind of hurts me to think that he would actually want to possibly pass his disease on to a small infant. I mean he has to realize that there's a good chance of him passing on his disease and that this baby will be born and suffer all because of his selfish ambition of wanting to be a father witch like I said if he adopted a baby I would 120 percent support him but biologically no

@j.t.theahole
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This sounds like my 4 yr old. Vision and hearing loss. Pain in the legs and on and off numbness. Genetics can’t find a mutation and it’s progressive. In search of others alike and awareness. God bless him and prayers for all people rare and pushing through another day.

@Sariah2020
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😒

@nikrosevca9294
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Great story. TY

@crystal01681
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RIP mitchell :( sorry, sweet boy. hope you're out there, reading the comments. id like to think you are. i can't believe living without answers besides your own experience.

@juicyboxesxo
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TΓΌrk var mΔ±?

@ozgurcaganiren2932
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Rest easy brotherπŸ’”πŸ•ŠοΈ

@YoungTeams-x4f
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He may have suffered in this lifetime, but I would like to believe that he will live in peace with Jesus in the next life. πŸ•ŠοΈ

"For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us." - Romans 8:18

@MrPenguin91809
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πŸ™.

@vickiesmith3021
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as someone who is also a patient in the undiagnosed disease network, i appreciate this video very dearly. helps me feel seen. thank you.

@TheUpsidedown44
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The truth is....there's probably THOUSANDS of people that have this disease. They're just too poor to find out what they have. It must be nice to have a disability and have the money to find out what you have.

@ChazTheFONER
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I wouldn't have lasted, good for him for fighting

@BEACHPEOPLE37
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Weird how this video was recommended to me five years after I watched it. Was still in high school too πŸ’€

May Mitchell Rest in Peace.

@bluecraft2012
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Omg R.I.P. Mitchell, I hope you can achieve all the dreams you wish to accomplish in this life in the next.

@Buhhnana2283
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This case can only be extreme hypochondria.Sadly his neurosis of hypochondria has actually killed this poor young man.

@caspaabriel4794
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RIP

@acidity2k486
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Trust Jesus Christ Prayers

@TheGoodTreePodcast
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God bless you and your family!
Thought I don’t have a 2 in the world disease, I have dealt with health issues for myself and one of my kids that the doctors don’t know what it is or why we have it? the unknown is worse then the disease!

@Beekind83
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its fake. its reversed.

@napalmbhoji