Mastocytosis - An Orphan Disease

I'm sorry this video is long but I wanted to be as informative as possible. There are so many people out there who have NEVER heard of this rare, incurable and life threatening disease so it is my mission to have my voice heard about MASTOCYTOSIS. I'm not doing this just for my daughter but for everyone else who suffers from this horrible disease. I am here to help those who suffer RAISE AWARENESS. WE NEED TO FIND A CURE!! I DO NOT make any profit from doing these videos and I have permission to use Giovanni Lamanna's song "We Look To You". Thank you to all of you who have helped make this video possible by allowing me to use your photos. Together we can SPREAD THE WORD AND RAISE AWARENESS TO FIND A CURE!!

Category:

Education

Tags:

• Mastocytosis
• Orphan Disease
• Rare Disease
• Urticaria Pigmentosa

[Ann73102]

Del, as you know you, all my Masto Sistas, and those with Mast Cell Disorders are VERY WELCOME.

[Ann73102]

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]

I hope this one works. Please let me know.

[suey7777]

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.

[TheLadybugDawn]

I have this disease. I was diagnosed at 4 weeks.

[mandyandsons]

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

[Peyton1251]

My sister has this disease And i didnt kno very much about it thank you soo much ann!

[Ericdmusic]

I cry every time I see this because I have masto! It took some of my hearing! WHHHHHHHHHHHHHHHHHHHHHHHHHHHHH­HHHYYYYYYYYYYYYYYYY UUUUUUUUUUUUUUUSSSSSSSSS??????­??????????

[gymfinitycoach]

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!

[therealmdmendes]

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]

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!

[tina2679]

Im new to the masto world. I have a 5 month son that has it. Where did the song come from?

[LiPgLoSsGaLz]

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.