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
660
Mindy Lynn :
I have lhermittee declose, pten gene and cowdens so rare. have u dealt with them
2026-07-25 14:11:31
0
Leah Pillarella :
my son had a rare syndrome it's called budd chiari syndrome he passed away at the age of 22 . it took so long for him to be diagnosed. he died a horrible painful death
2026-07-25 12:52:06
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Cassie :
Mitochondrial disease NEEDS more awareness!!!!!
2026-03-13 18:43:04
10
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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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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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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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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𝔸𝕤𝕙 :
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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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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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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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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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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Shannon Cussick :
I have mitochondrial disease, and was diagnosed in 2023 at age 25 the strain i have is NARP and is hereditary!.
2026-03-01 12:47:34
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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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miraspicyqueen :
VEDS here with three kiddos with the same. Appreciate this post soooo much
2026-03-01 16:45:21
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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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Strikefast 🔻 ☭ :
Thank you for acknowledging us ❤️🩹
2026-03-01 01:44:57
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magnetvalley :
I have two rare kiddos: Classic Galactosemia (don’t skip the Newborn Screening!) and Cat Eye Syndrome. ❤️
2026-03-01 01:07:49
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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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stephs_healthjourney :
HEDS, MCAS and POTS taken me 35 years to be diagnosed 🤦♀️
2026-03-02 22:44:06
10
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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Rosa❌ :
Thank you so very much for all of the information you post!! I love your videos! My son has a rare Kidney Disease. We found out when he was about a year old and had been having symptoms that were treated with allergies for a few months before an ER Pediatrician had diagnosed him with it. He had read about it 2 weeks prior to my son coming into the ER instead of his Dr. 💚💚💚
2026-03-01 01:09:04
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