my son was just diagnosed with systemic mastocytosis and he is 10 months old, I really like this video cause I am so worried about his future. He has reactions every day and it's very very scary but when I googled it for the first time it popped up with a autopsy of a 1 year old which scared the crap out of me so I really love this video because your right
Bridget---excellent video. I have POTS/EDS and I couldn't agree with you more about not letting an illness such as ours define your life. Life isn't over by a long short and we need mroe people like you helping others.
Im 49, living with Mastocytosis. Most people cant do everything they have to choose the things they can, just like us...I liked this statement very much.
I make the most of what I can. From what I'v read I think I'm very lucky, as I do not take all the Meds for this condition as i call it ( my condition ) My main prevention is to keep my core temperature down..I find this hard because im a water baby or mum with 3 adult kids now.
I have been struggling to get rid of facial flushing, and as I see in this video Bridget does not suffer from this. Could anyone tell me how to get rid of the flushing? Thank you
Great video. I have aggressive systemic masto. I even did 6 months of Gleevec at MD Anderson but it did not help at all and made my liver really bad. Anyway, I am one of the few that can't take gastrocrom, I have every adverse reaction to it. Now I only take h1 and h2, benedryl, epi-pen when needed (I am a shocker), cymbalta and I have found a great new drug called LDN (Low Dose Naltrexone). Its a miracle drug, have better concentration, no brain fog. Google LDN and check it out.
@scrchik4kix - everyone is different...i know some people on way more meds than i am on (scary thought) I do run every day and am pretty active...i think some people are born with it and some people acquire it later in life, but it seems unclear why that is. It seems lifelong cases have it "easier" than adult onset cases, but again, that's something i've heard, I have no solid basis for that.
im wondering why so may meds????? thats insane! i have a serious case of systemic mastocytosis and dont take any medication but histamine blockers...i have episodes about 3 to 4 times a month and i stay active and thats it. ive run 4 marathons and played college soccer div 2 level...i was diagnosed as a child so maybe that is the difference...not too sure. also i was told its something you are born with. best wishes to u and thanks for sharing your story
I was born with systemic mastocytosis and was diagnosed at 7. I have a horrible case of it and you all know what this disease does. It's caused me to pass out while vomiting, having steaming hot diarrhea, hives, asthma attack, slow heart beat, itching all over, etc etc... all at the same time. But, I heal faster because of my high amount of histamine, and it doesnt keep me from enjoying sports. I am a happy boy. And I don't have bumps from mastocytosis anymore. nearly killed me but Im still here
Very good video. Very good message. I have had it since I was 30. I am 60 now. Diagnosed 5 years ago. It was nice to know what all those symptoms were about. I work 1/2 time. I like to think that God keeps dealing you these cards and you keep trying to win the game. Everytime I find out that I can't do something I fill it with something else. So no hiking, biking, running, drinking beer. But .... now a semi-pro photography, learning squeeze box accordian, lots more reading, magic.
@MrBobkeenan man i want to play accordian so badly, you have no idea. that would be awesome. i like your outlook too, in terms of "well i can't do these things, so I'll learn new things....that's awesome. so many people seem to want to give up
Mastocytosis is a strange disease and yes it can be dangerous, but don't make it dramatic. So Bridget thanks for your reaction. I have also urticaria pigmentosa and systemic mastocytosis with a tryptase concentration round 100 ng/l. I take 2-3 times a week anti-histaminic drugs against itching. Thats it. Fortunately I have no other complaints. My message is: does not allow that the disease rules your world!
thank you Bridget finally a video about masto that isn't some self indulgent goop with soppy melodramatic elevator music in the background!
"making peace with this disease" ... yes so true, hard to do, as you noted in the first couple of years, due to grief etc et al... but YES we go on ... we keep living and loving.
my son was just diagnosed with systemic mastocytosis and he is 10 months old, I really like this video cause I am so worried about his future. He has reactions every day and it's very very scary but when I googled it for the first time it popped up with a autopsy of a 1 year old which scared the crap out of me so I really love this video because your right
mandyandsons 5 months ago
Bridget---excellent video. I have POTS/EDS and I couldn't agree with you more about not letting an illness such as ours define your life. Life isn't over by a long short and we need mroe people like you helping others.
mprado1958 5 months ago
Thanks Bridget, I needed that. Especially this week, after Toradol flared everything up to kingdom come. I flushed so bad I looked like a lobster.
How did my med tote get on your vid? Lol
Nanci
lilbatz 1 year ago
Bridget, what new mast cell meds are in the pipeline? I haven't seen any new drugs come on the scene in years.
cloudbuster77 1 year ago
Im 49, living with Mastocytosis. Most people cant do everything they have to choose the things they can, just like us...I liked this statement very much.
I make the most of what I can. From what I'v read I think I'm very lucky, as I do not take all the Meds for this condition as i call it ( my condition ) My main prevention is to keep my core temperature down..I find this hard because im a water baby or mum with 3 adult kids now.
Iv never made a comment before...thanks
Just stay cool
veb1961 1 year ago
I have been struggling to get rid of facial flushing, and as I see in this video Bridget does not suffer from this. Could anyone tell me how to get rid of the flushing? Thank you
mattph44 1 year ago
Great video. I have aggressive systemic masto. I even did 6 months of Gleevec at MD Anderson but it did not help at all and made my liver really bad. Anyway, I am one of the few that can't take gastrocrom, I have every adverse reaction to it. Now I only take h1 and h2, benedryl, epi-pen when needed (I am a shocker), cymbalta and I have found a great new drug called LDN (Low Dose Naltrexone). Its a miracle drug, have better concentration, no brain fog. Google LDN and check it out.
wendyhall44 1 year ago
@scrchik4kix - everyone is different...i know some people on way more meds than i am on (scary thought) I do run every day and am pretty active...i think some people are born with it and some people acquire it later in life, but it seems unclear why that is. It seems lifelong cases have it "easier" than adult onset cases, but again, that's something i've heard, I have no solid basis for that.
bridgetvoid 1 year ago
im wondering why so may meds????? thats insane! i have a serious case of systemic mastocytosis and dont take any medication but histamine blockers...i have episodes about 3 to 4 times a month and i stay active and thats it. ive run 4 marathons and played college soccer div 2 level...i was diagnosed as a child so maybe that is the difference...not too sure. also i was told its something you are born with. best wishes to u and thanks for sharing your story
scrchik4kix 1 year ago
I was born with systemic mastocytosis and was diagnosed at 7. I have a horrible case of it and you all know what this disease does. It's caused me to pass out while vomiting, having steaming hot diarrhea, hives, asthma attack, slow heart beat, itching all over, etc etc... all at the same time. But, I heal faster because of my high amount of histamine, and it doesnt keep me from enjoying sports. I am a happy boy. And I don't have bumps from mastocytosis anymore. nearly killed me but Im still here
IchBinSchtiffy 1 year ago
Very good video. Very good message. I have had it since I was 30. I am 60 now. Diagnosed 5 years ago. It was nice to know what all those symptoms were about. I work 1/2 time. I like to think that God keeps dealing you these cards and you keep trying to win the game. Everytime I find out that I can't do something I fill it with something else. So no hiking, biking, running, drinking beer. But .... now a semi-pro photography, learning squeeze box accordian, lots more reading, magic.
MrBobkeenan 1 year ago
@MrBobkeenan man i want to play accordian so badly, you have no idea. that would be awesome. i like your outlook too, in terms of "well i can't do these things, so I'll learn new things....that's awesome. so many people seem to want to give up
bridgetvoid 1 year ago
Great Video Bridget! Thanks for posting :)
viktoria66 1 year ago
Thanks, great video. I can relate and appreciate your view.
jimmymac226 1 year ago
Wonderful video. Really helped me gain some perspective on the matter. :)
leomaaan 1 year ago
Mastocytosis is a strange disease and yes it can be dangerous, but don't make it dramatic. So Bridget thanks for your reaction. I have also urticaria pigmentosa and systemic mastocytosis with a tryptase concentration round 100 ng/l. I take 2-3 times a week anti-histaminic drugs against itching. Thats it. Fortunately I have no other complaints. My message is: does not allow that the disease rules your world!
SjaokdeTerrier 1 year ago
thank you Bridget finally a video about masto that isn't some self indulgent goop with soppy melodramatic elevator music in the background!
"making peace with this disease" ... yes so true, hard to do, as you noted in the first couple of years, due to grief etc et al... but YES we go on ... we keep living and loving.
Thank you so very very much for posting this!
micromantis 2 years ago 2
Awesome video, B. I just can't believe it's been three years. *hugs*!
lachesis1169 2 years ago
Awesome job sweetie!
TheFoxxy1 2 years ago