Beleive it or not I have internal urticaria and my diagnosis is Urticaria Pigmentosa Mastytosis. I have to carry an Epi-Pen AT ALL TIMES DUE TO SEVERITY OF MY ILLNESS.
nice video my 10 month old was misdiagnosed with eoe and now confirmed systemic mastocytoma instead, they actually told me once " we know he is sick but we don't know what to do" very scary to hear about your 8 month old son, I kept hunting for someone to listen, finally a allergist listened and watched the videos of reactions and figured it out
I cry every time I see this because I have masto! It took some of my hearing! WHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHYYYYYYYYYYYYYYYY UUUUUUUUUUUUUUUSSSSSSSSS????????????????
I believe my daughter who is 5 years old has this disease. She has been diagnosed with EGID, but I think this diagnosis is wrong. This disease fits her symptoms to a T! I was wondering if there is a leading doctor or hospital to take her to. Thanks!
i have mastocytosis since i was a baby i'm now 17 almost 18 and i still have it.
it hurts when people say or think that you're weak because you never feel well but i still try to smile. they just don't understand the fact that you really are ill.
it really helps me to see and hear that i'm not the only one and that there are people who understand me and what i'm going through.
i have mastocytosis since i was a baby i'm now 17 almost 18 and i still have it.it hurts to hear people say and see them think you're weak because you never really feel alright. i often feel really sick and have a lot of headaches.
it helps me to hear that there are people who understand me and what i'm going through.
i was diagnosed with Mastocytosis when i was an infant, my parents gave me little information about it besides what was allergic to which is a list of many. i do have lesions but they arnt in noticeable places exept for my neck which people mistake as a hicky and judge quickly.i never knew the severity of it until now. I do know however that the doctors at the cleveland clinic in Ohio were going to send me over seas because they have never seen a kid with mastocytosis before. i am now 16.
Thank you so much for doing this, so few people know about this terrible illness!! It took over 3 decades to diagnose me! I did a series of 4 videos recently though mine took a look at the lighter side because I need to laugh to get through the day. Though my last one showed the not so great side.
We all must do our share to spread the word so a huge thank you to you!
Healing Hugs to you and all who suffer from the terrible illness!
You are very welcome Viktoria. You know me doing everything and anything I can to help Raise Awareness. Once I get the new computer I'll be working on more projects and videos. Hope you are doing well. Hugs to you from Brookie and I.
Beleive it or not I have internal urticaria and my diagnosis is Urticaria Pigmentosa Mastytosis. I have to carry an Epi-Pen AT ALL TIMES DUE TO SEVERITY OF MY ILLNESS.
suey7777 1 week ago
I have this disease. I was diagnosed at 4 weeks.
TheLadybugDawn 3 months ago
nice video my 10 month old was misdiagnosed with eoe and now confirmed systemic mastocytoma instead, they actually told me once " we know he is sick but we don't know what to do" very scary to hear about your 8 month old son, I kept hunting for someone to listen, finally a allergist listened and watched the videos of reactions and figured it out
mandyandsons 5 months ago
My sister has this disease And i didnt kno very much about it thank you soo much ann!
Peyton1251 1 year ago
I cry every time I see this because I have masto! It took some of my hearing! WHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHYYYYYYYYYYYYYYYY UUUUUUUUUUUUUUUSSSSSSSSS????????????????
Ericdmusic 1 year ago
I believe my daughter who is 5 years old has this disease. She has been diagnosed with EGID, but I think this diagnosis is wrong. This disease fits her symptoms to a T! I was wondering if there is a leading doctor or hospital to take her to. Thanks!
gymfinitycoach 1 year ago
this video really helps me.
i'm from the netherlands / holland
i have mastocytosis since i was a baby i'm now 17 almost 18 and i still have it.
it hurts when people say or think that you're weak because you never feel well but i still try to smile. they just don't understand the fact that you really are ill.
it really helps me to see and hear that i'm not the only one and that there are people who understand me and what i'm going through.
thank you for making this video!
therealmdmendes 1 year ago
this is a really great video!!
i'm from the netherlands/holland
i have mastocytosis since i was a baby i'm now 17 almost 18 and i still have it.it hurts to hear people say and see them think you're weak because you never really feel alright. i often feel really sick and have a lot of headaches.
it helps me to hear that there are people who understand me and what i'm going through.
thank you for making such a great video!
therealmdmendes 1 year ago
Im new to the masto world. I have a 5 month son that has it. Where did the song come from?
tina2679 1 year ago
i was diagnosed with Mastocytosis when i was an infant, my parents gave me little information about it besides what was allergic to which is a list of many. i do have lesions but they arnt in noticeable places exept for my neck which people mistake as a hicky and judge quickly.i never knew the severity of it until now. I do know however that the doctors at the cleveland clinic in Ohio were going to send me over seas because they have never seen a kid with mastocytosis before. i am now 16.
LiPgLoSsGaLz 1 year ago
Wonderful video! Now I finally know what my son has. haha I hate the doctors
MuseOfDreams 1 year ago
Wonderful video! Now I finally know what my son has. haha I hate the doctors
MuseOfDreams 1 year ago
Del, as you know you, all my Masto Sistas, and those with Mast Cell Disorders are VERY WELCOME.
Ann73102 1 year ago
Ann thank you for making this video for all those with mast cell diseases! Love you gal!
Del
odelbugo 1 year ago
Thank you so much for doing this, so few people know about this terrible illness!! It took over 3 decades to diagnose me! I did a series of 4 videos recently though mine took a look at the lighter side because I need to laugh to get through the day. Though my last one showed the not so great side.
We all must do our share to spread the word so a huge thank you to you!
Healing Hugs to you and all who suffer from the terrible illness!
Leslie
Poetessa2 1 year ago
You are very welcome Viktoria. You know me doing everything and anything I can to help Raise Awareness. Once I get the new computer I'll be working on more projects and videos. Hope you are doing well. Hugs to you from Brookie and I.
Ann73102 1 year ago 2
Thanks Ann! Very good video..You did a magnificent job!.and Thanks for spreading Awareness....
viktoria66 2 years ago
Ann, it's too long and overly sentimental. People who don't have this condition will not watch it through.
The information about mastocytosis within was great, but gets lost in all the goop and crass over sentimentality.
To me this is a personal document for yourself, family + friends and for that purpose it does well.
Yes there needs to be so much more awareness raised for mast cell disorders and if this video goes anyway in doing that, well done
micromantis 2 years ago
Amazing video! really touched me, i myself have acute mastocytosis
lopzy7 2 years ago
I hope this one works. Please let me know.
Ann73102 2 years ago