Vitamin D, pregnancy and birth date

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Vitamin D, pregnancy and birth date

Postby user123 » Mon Mar 25, 2019 3:26 pm

Sporadic cavernomas (at the least some of them) are assumed to be congenital. Vitamin D may prevent cavernomas development and progression. Vitamin D level is more likely to be low at winter (also depends on the geographic location) if a person does not take the supplementation. Were studies of the dependence of cavernoma presence on the birth date carried out?
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Re: Vitamin D, pregnancy and birth date

Postby Connie Lee » Fri Mar 29, 2019 10:34 pm

There's more and more evidence that sporadic cavernous angiomas are not usually congenital. There is no published study on birthdate, but I believe it's something that Mayo Clinic has looked into.
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Re: Vitamin D, pregnancy and birth date

Postby user123 » Tue Apr 09, 2019 9:36 pm

Connie Lee wrote:There's more and more evidence that sporadic cavernous angiomas are not usually congenital.

Is it known how and why non-congenital sporadic cavernomas form (except radiation-induced and associated with developmental venous anomalies)? Do they form from some congenital predecessors?
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Re: Vitamin D, pregnancy and birth date

Postby Connie Lee » Fri May 03, 2019 10:59 pm

We do not know why they form in the sporadic form of the illness. It is likely an unlucky combination of factors, like a tiny venous anomaly not visible on MRI plus gut microbiome factors plus some else. Lots more research needs to be done.
Connie Lee
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On this journey since 2000, when my infant daughter was diagnosed.
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Re: Vitamin D, pregnancy and birth date

Postby Debi32355 » Fri May 17, 2019 2:25 pm

Good morning all:
When I was diagnosed at age 48 in 2003 with a sporadic CM in my left midbrain/thalamus, I was told that the CM itself was NOT thought to be congenital, and that it had probably developed within previous 10 years from the DVA that WAS congenital. I was born with two large hemangiomas on my head and was treated with radium seeds injected into those hemangiomas from the age of 6 months to 18 months. I was told that this also may have contributed to the development of the CM, although there are a lot of years between the two.
Debi (CM at left midbrain/thalamic juncture with 5 hemorrhages)
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Re: Vitamin D, pregnancy and birth date

Postby Connie Lee » Sun Aug 25, 2019 2:49 pm

Debi - did you ever get to correspond with Libby Davis before she passed away? She had the same experience with radium pellets for hemangioma and later developing cavernous angioma in her brain.
Connie Lee
President and CEO, Angioma Alliance
On this journey since 2000, when my infant daughter was diagnosed.
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Re: Vitamin D, pregnancy and birth date

Postby Debi32355 » Thu Sep 12, 2019 5:19 pm

Hi Connie: Sorry for the delayed response!!

Yes, Libby and I did connect when I was first diagnosed. Our stories were eerily similar in that we were the same age group (maybe a year or two difference), and our treatments for the hemangiomas were exactly the same. I guess that's how they did it back then. I don't remember where hers were, mine were both on my head, one in the back (nice scar there) and the other top left rear corner (big dent there). I do have a DVA. It was so nice to connect with someone who had a very similar history, and was just a great person. She is missed.

While I have you here, I'm wondering if they are looking into the effect of hormones on our CMs. I was diagnosed basically at the beginning of peri-menopause. Since menopause, I have had no bleeds, and my latest scan this year shows no growth (the lesion is the same size as when it was diagnosed 16 years ago). I haven't had a leak in 11 years (I had 3 in 2003, 1 in 2004 and 1 in 2008). I am convinced that hormones played a part in my bleeds.
Debi (CM at left midbrain/thalamic juncture with 5 hemorrhages)
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