Dr. Linda Bluestein
Region: US
Wednesday 01 March 2023 17:06:55 GMT
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k80w1 :
My son was diagnosed last month at 18. Only 1 out of the 17 genes. So far, eyes and heart are normal. He’s tall and has pectus excavatum.
2023-11-14 12:23:56
118
jessicac9696 :
My nephew just passed from this at 22
2024-02-12 14:08:59
28
Paula Petersen :
my partner had marfans and died at 23
2023-03-17 21:26:27
465
glumgirl___ :
Marfans at 33, blind in my left eye, about to get a prosthetic due the retinal detachment, severe scoliosis, enlarged aorta, just had laser on my thinning retina in my right eye but you know what? I’m alive, living with the pain and still loving my life.
2025-07-26 00:16:05
15
AngiG :
I wasn't diagnosed until age 30, going on 58 now and it is impossible to be taken seriously. Thank you for being a voice 🙌💜🙌
2025-02-17 23:41:52
62
Dustin Bell 🇺🇸 :
Marfans here. I’m 30 and the tallest person in my immediate family. Aortic root is dilated at 3.75cm.
2024-10-25 10:58:33
3
The eye of God :
My mom and my brother were marfans and they died at the same age 26 I was diagnosed on April 12th that I'm also a marfan and I need a surgery
2026-08-02 21:35:52
0
Deb :
My little brother had Marfan's, he lived to 21.
2023-04-09 05:57:46
30
Anastasia R. :
my brother died from Marfan's syndrome he was 25. nobody would give him medical insurance. so he died from an an Aortic aneurysm. 😞
2025-02-25 02:21:55
21
Christina :
I have marfans, had 6 surgeries on repairing tears and aneurisms in my aorta. Also 2 valve replacements. 27 and fighting through 💪🏼
2023-03-19 04:10:09
47
Jennifer Ann :
I was diagnosed at 25. I’m 45. Spontaneous genetic mutation. No one in my family that we have found has it. So that’s all they can think.
2023-06-09 03:34:09
15
Jen Bollinger177 :
my nephew just died with this. He was 19.
2025-11-06 19:41:33
5
Call.Dem :
I’m 22 and undiagnosed and i think i might have it, should i mention this to my doctor? I was diagnosed with POTS and I believe they have correlation
2026-06-20 18:27:58
0
clarkshana :
I have Marfans and you have to stay up on it and get you a good team and go to your appointments and check ups!!
2025-02-22 22:01:56
34
Athena 💤 🕷️ :
ppl w blue eyes
2023-12-16 02:27:10
0
Talya :
thank god for new treatments. I'll be 32 next may. the level of anxiety I have everyday of having an unexpected early death is unreal.
2024-09-15 05:57:53
21
Juanita :
Question, does everyone with Marfans have the same facial characteristics or just some?
2024-12-06 05:43:13
6
shelly26.65 :
It is so amazing to learn! I worked with a nurse who had this.
2023-03-01 18:37:26
12
Attack_Yuuki :
I have step brothers who are identical twins. One has Marfans and the other doesn't. How does that work?
2023-03-01 18:32:29
49
keneemeaniemykneenope :
I just found out today my son has it & we have to get more testing done. He’s 12 I’m so scared
2024-08-11 04:57:35
0
nathaliedesaever3 :
I gave marfan, mcas ,pots, babesia. histamine = dilatation. mcas trigger deed mijn aorta groeien.
2025-03-23 20:49:29
1
Belsy Soto Galeano :
You mention it's a hereditary disorder but I am the only one in my family, mother's side and dad side. Only one!
2025-04-21 03:00:21
2
Joelle Castellano :
is this different from Elhers Danlos? 2 of my kids have ED
2023-05-12 00:35:43
3
Day day :
Hi, I’m 24 and was diagnosed with Marfan at age 4. Genetic testing said I had a DELETION of FBN1 gene. I never get real answers as to what’s going on with me
2024-09-16 03:35:41
2
bajabash :
i have suspicions that i might have this but im 25 and nobody takes me seriously 🥴
2023-08-20 23:54:50
3
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