I have had mastocytosis since I was about 5 and now I am 16, I just rash really easy just from walking for more than 10 minutes. I also have spots on my back, chest, and stomach. I really hate the way it looks :/
So wht are some of th 1st signs? I hav a 3mo old baby and I've notice brown rough spots on her legs and arm.
Thnk u for this awareness video:-)
If I had 1 wish, it would be for all babies n kids to be free of any illness tht prevents them from having a normal life. My prayers go to all wonderful children in th world...God Bless :-)
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 for sharing you story and getting the word out about this horrible illness which I've had most of my life and nearly died countless times from anaphylactic shock. Finally 38 years later they diagnosed me and it's a difficult and painful and very isolating because people don't understand, my spots are hidden by make up but that is the least of my worries!! I applaud everyone who raises awareness and shares their story, it takes courage. This is a lovely video, healing hugs to you!
i also have the same condition,i have spots all over my body (brown)..i have severe reactions every time a kiss bug (assassin bug) bites me...in some occasions i do collapse and pass out for few minutes..its is advisable that you always carry with you an antihistamine..this helps lessen the pain and prevents one from losing consciousness, if taken immediately. im now 29yo
I have brown spot like freckles on the inside of my forearms (faintly), my torso, inner part of my legs, and a few on my back. The "freckles" are more pronounced where I am most covered, while the sun exposed areas have lighter, fewer spots. I am fortunate the spots do not itch, as is the usual m.o. Due to the rarity of the disease Docs I went to had no idea what was wrong with me for several years. The marring of my otherwise clear skin & the fear of the unknown was quite taxing.
This is a wonderful video. I myself have the Systemic mastocytosis, I don't get all those nasty markings. But I do have anaphylaxis many times and have been convered head to toe in hives when my body triggers, It so sad to see children with this, it just breaks my heart.
What a terrific vehicle for sharing this information!! My son has mastocytosis, as well, and this is a great way to share the information with family, friends, and care takers!
I'm sorry this video is long but I wanted to include as much information as I could to help educate those who have never heard of it or just don't know how serious this disease is. Thank you all for taking the time to watch and learn. Hopefully by Raising Awareness there will be a cure for this disease one day.
I have had mastocytosis since I was about 5 and now I am 16, I just rash really easy just from walking for more than 10 minutes. I also have spots on my back, chest, and stomach. I really hate the way it looks :/
funfun4mee 1 month ago
Oh my gosh I have this too. I have never met or seen anyone else with it.
I'm glad I'm not the only one!
ALexxCan22 8 months ago
I have mastocytosis and it has never bothered me
graciaguana 9 months ago
I will I have it and it breaks my family heart
Ericdmusic 1 year ago
So wht are some of th 1st signs? I hav a 3mo old baby and I've notice brown rough spots on her legs and arm.
Thnk u for this awareness video:-)
If I had 1 wish, it would be for all babies n kids to be free of any illness tht prevents them from having a normal life. My prayers go to all wonderful children in th world...God Bless :-)
FerchoyMayis 1 year ago
@FerchoyMayis I'm real sorry i have it too my mom knows how you feel
Ericdmusic 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
@LiPgLoSsGaLz Hello Lip Gloss? Were you born with it? and is it systemic or cutaneous?
asapdiva 1 year ago
@asapdiva i have no clue!!
LiPgLoSsGaLz 1 year ago
@asapdiva You have to be born with it ! it can't develope or just be caught
Ericdmusic 1 year ago
Thank you for sharing you story and getting the word out about this horrible illness which I've had most of my life and nearly died countless times from anaphylactic shock. Finally 38 years later they diagnosed me and it's a difficult and painful and very isolating because people don't understand, my spots are hidden by make up but that is the least of my worries!! I applaud everyone who raises awareness and shares their story, it takes courage. This is a lovely video, healing hugs to you!
Poetessa2 2 years ago
i also have the same condition,i have spots all over my body (brown)..i have severe reactions every time a kiss bug (assassin bug) bites me...in some occasions i do collapse and pass out for few minutes..its is advisable that you always carry with you an antihistamine..this helps lessen the pain and prevents one from losing consciousness, if taken immediately. im now 29yo
narobby1 2 years ago
I have brown spot like freckles on the inside of my forearms (faintly), my torso, inner part of my legs, and a few on my back. The "freckles" are more pronounced where I am most covered, while the sun exposed areas have lighter, fewer spots. I am fortunate the spots do not itch, as is the usual m.o. Due to the rarity of the disease Docs I went to had no idea what was wrong with me for several years. The marring of my otherwise clear skin & the fear of the unknown was quite taxing.
SpotsDontDefineMe 2 years ago
This is a wonderful video. I myself have the Systemic mastocytosis, I don't get all those nasty markings. But I do have anaphylaxis many times and have been convered head to toe in hives when my body triggers, It so sad to see children with this, it just breaks my heart.
Plummy30 2 years ago
What a terrific vehicle for sharing this information!! My son has mastocytosis, as well, and this is a great way to share the information with family, friends, and care takers!
sebaldre 2 years ago
lovely vidio, so informative. I too have mastocytosis but not on my skin. Nice that you mentioned about chrisopher reeve too
barmybeth 2 years ago
I'm sorry this video is long but I wanted to include as much information as I could to help educate those who have never heard of it or just don't know how serious this disease is. Thank you all for taking the time to watch and learn. Hopefully by Raising Awareness there will be a cure for this disease one day.
Ann73102 2 years ago