Beachgem10
Region: US
Sunday 01 March 2026 00:57:05 GMT
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psilvestri :
Please Learn about Ehlers Danlos Syndrome. I’ve been suffering since I was 6. Not diagnosed until 64!
2026-03-01 02:07:11
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Cassie :
Mitochondrial disease NEEDS more awareness!!!!!
2026-03-13 18:43:04
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Tattedcat13 :
Ehlers-danlos syndrome, MCAS, POTS… none of them are as rare as anyone thinks. It’s amazing how often doctors tell me my kiddo can’t have hEDS, POTS or MCAS - yet here she is…
2026-03-02 01:54:55
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MA1015 :
What is black stone?
2026-09-13 20:54:53
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Grace :
One time my doctor told me that saying (I have aEDS and 30 comorbidities) and I told him that when he’s already in the savanna you think zebras not horses 😅
2026-03-01 01:03:36
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✨Lauren ✨ :
Having a rare disease is exhausting
2026-03-01 12:06:59
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tay b :
Can you talk about Clarksons Disease? I just saw a young boy died from it and it is apparently very rare and not widely known about
2026-08-11 19:10:03
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Natalya Hope 🍉🕊️🇲🇽🪶 :
Narcolepsy here! People think it’s just that I’m gunna fall over asleep like in the movies. It’s literally like I’m drugged for days at a time- can barely move, barely talk, extreme dreamlike brain fog. It is neurodegenerative, destroying brain cells that regulate sleep, muscle contraction, stress responses, reward seeking, metabolism, hormones, cardiovascular responses… Etc, which leads to narcolepsy being a severe, multi-system disease. But haha yeah I just fall over it’s so funny!
2026-03-02 22:53:44
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miraspicyqueen :
VEDS here with three kiddos with the same. Appreciate this post soooo much
2026-03-01 16:45:21
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wherethefismyvillage :
I’m a mom of three zebras and I am so damn tired. Wish I went to med school but am still pushing through reading studies trying to find solutions.
2026-03-01 01:30:09
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Linds Ann :
My son is a zebra! Severe hemophiliac. He almost bled out at 4 days old because we were ignored. Thankful for the one doc who pushed others to look for a zebra. Now he is 7 and thriving and I’m forever grateful for her!
2026-03-01 01:29:17
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lambscribbles :
I think it’s not often talked about, but even after getting a “zebra” diagnosis, sometimes other doctors will question it. As an example I got diagnosed with POTS and EDS and whenever I have to go to a new specialist because of my other health issues, those are the ones always called into question. It can be frustrating at times but I can sort of understand it
2026-03-01 03:55:20
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Molly :
Hi! Zebra here🫶🏻 thank you for spreading awareness!! I think this is what you meant in the caption but to clarify- a disease is considered rare if it affects <1 in 2,000 people and there are over 7,000 identified rare diseases so far!
2026-03-02 03:49:22
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Joy Sexton :
My son has Rhombencephalosynapsis (RES) a rare brain malformation where the cerebellar hemispheres fuse due to a missing or abnormal vermis. He was diagnosed in 1996 at 5 months old. It causes multiple symptoms that continue throughout life.
2026-09-14 01:34:58
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Sam Villy :
As a parent to a zebra, thank you for saying this! It often feels like I’m not doing enough but to be seen, is amazing. Thank you.
2026-03-01 01:55:02
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Kat :
Zebra here! I took longer to get diagnosed bc I was born with a birth defect so doctors didn’t consider I could have multiple things, I’ve been called “complicated” a lot 😅
2026-03-01 06:39:26
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MonkeyStronger :
My favorite line is I am the zebra medical school told me not to think about… I have 2 unrelated 1 in a million genetic disorders. Being the 1st in medicine is scary for sure. Together we are strong!
2026-03-01 01:19:46
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Nicole Rene :
My twins are numbers 23 and 24 ever diagnosed with theirs in the world. It’s been a roller coaster already and they’re only 2 years old.
2026-03-01 01:41:01
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Amy Adkins :
I love your videos. You have such a passion and it shows. I have a Zebra, and what I wouldn’t give for a Doctor like you.
2026-03-01 01:05:25
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C0mrad3 🔻 ☭ :
Thank you for acknowledging us ❤️🩹
2026-03-01 01:44:57
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Cara Feable :
Had to stand in front of the ER room door to get the doc to take my brother with Marfan’s & Alpha 1 Antitrypsin Deficiency seriously
2026-03-01 01:02:32
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Huds :
The zebra community deserves so much more awareness 🫶 living with something uncommon can feel isolating and frustrating. I dealt with flare ups, puffiness and constant fatigue and thought I just had to cope forever. Nothing I tried felt sustainable and I felt defeated. A girl in a healing group shared Eat like a Woman Protocol written by Loren Green and I got curious. Few weeks later I was 30 lbs lighter, flat belly, more stable days overall. Why does this feel hidden?
2026-03-02 20:31:11
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Maximón the cat :
I remember a rheumatologist telling me, "If you hear hoofbeats, it's probably horses not zebras." I told them that lots of animals have hooves, and if they aren't gonna look, they can't say it's horses OR zebras. So yeah, turns out he was wrong and ankylosing spondylitis does affect women.
2026-03-01 04:06:07
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mvmiller52 :
my daughter has rett syndrome
2026-03-01 01:16:31
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FatFattheSuperCat :
I have a glial cell deficiency and RSD
2026-03-01 01:05:08
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