Are you born with mast cell disease or do you get sick?  

I feel like it's a slow simmering thing you're born with.

Hey PJ,

According to Dr. Gerhard Molderings of Germany and other genetic researchers, this is a genetic disease.  That includes MCAS.   What triggers it they don´t know and somehow our own DNA is involved in this too and this is why not one patient is alike.   But they do know it´s genetic which is why you can´t "catch"  it nor can you cause it.   You´ve got to inherit the genetic defect and from that point on only God knows for sure so far.  

So, you didn´t do anything to cause it, it was there when you were born, so you are right, it´s been a slow train coming.    

Now, could you have prevented it or made it worse?   Don´t bother torturing yourself with such really pointless questions for at this point in time they have yet to find the genome for this defect and until they can they can´t trace what causes might be involved and that may take YEARS to find out.   So, don´t get feeling guilty or upset over it.  It will avail to nothing at this time.   Once they can understand it, then they can tell us how to prevent it and the such, so, really, don´t worry about it, it´s not worth the time or energy.


Lisa

good ? pjp123 clonal mast cells are inherted

but not the bone marrow mast cell didease

that is coused by sumthing

if any one knows what coused there [ disease]
then we can help the kids pervent it from happerning
we all know we have had sumthing for years

WHAT MADE IT GO BAD ????
for me VENOM and menural labour

I agree with everyone

I think I had the predisposition as I have other family members with similar things, but  I think CT contrast triggered the severity of it for me

Wish I had never had it I tell ya!

I'm glad we are having this conversation. Looking back as a teenager I had problems with flushing and not tolerating opiates. Then in my twenties I had muscle fatigue in my arms. Maybe separate issues I don't know. For me when my masto came out was my first pregnancy, 6weeks before I gave birth my grandfather died who was like a father to me, then 2 weeks before I delievered I got the worse intestinal flu I have ever had. The day my daughter was born my grandma had a heart attack and after that she all of a sudden developed dementia.Then 3 months after giving birth I had thyroid surgery to remove goiters. At the time I think I handled it all well but looking back........ That was too much for my body. Two years later I had another baby and my body said that's it! That's when things got worse. So yeah I agree with the slow brewing theory. Each year a little more symptoms and then bam!
Melissa